A letter to Tomas Two Years Later

Dear Tomas,

Today it has been two years since we parted ways.  It might seem callous and mean, but I celebrated today.  I did yoga, hiiked, went out to eat and baked a cheesecake, all to celebrate the delight of your being gone.

Remember the long road we walked together?  8 months we knew you were there that you got to just hang around and grow fatter.

But two years ago today the skillful hands of Dr. Electron K. teased you off of my Carotid body, danced delicately around my facial nerves--nerves that he said you were trying to invade--and cut you out my neck.

I wish I could say that I never looked back, but I've thought about you a lot.  It took me a long time to regain my balance after you came knocking at the door.  I think part of it was your timing--Could you have been any sleazier--showing up when I was pregnant?!  And then because of that you just sat. so. long.

We finally got you out of there and I remember feeling so much better than I expected to part of the time, and really feeling kind of rotten the other part of the time.

Then the post-op infection came.  One last hurrah.  I still think of how grotesque my neck looked at the peak of the infection.  Quasi-modo's hump on my neck rather than my back.


Two years.  Andy's gone on deployment and returned again.  He made Chief.  We bought a house.

I went to Montana and met amazing, amazing women some of whom I now have the priveledge of working with.  They helped me learn to tell my story--to tell the story of you without hiding from it or minimizing it.

The girls have grown and I've been here to see them do so.  All they really know of you is that Mommy had a 'bump' that had to be taken care of by some doctors far away.   I'm clear for all known mutations, so hopefully they'll never have to live under the shadow of something like you.

A disc herniation--a silly, common ailment that lots and lots of people suffer from took me down hard.  How does it make you feel that it wasn't you Mr. Rare and Insidious Tumor that knocked me flat, but a stupid disc herniation?  

I didn't feel so great about it that's for sure.

Like a lot of women dealing with the dissolving of a relationship, I have some long-term issues to overcome.  Between you and that rotten disc I'm pretty angry at my body and I don't feel great about how it looks.  I'm working through this and this too, I shall overcome.

But if you gave me anything, Tomas, it was the realization that this life is to be lived because you never know when you're going to hit the under-belly of the lottery odds and get the one in a million malady...  Or even be tripped up and laid flat by common afflictions.

So even though I feel stuck sometimes still wading through the muck you left behind, I will live.  I WILL LIVE.

I will sled down the slopes of mountains and I will walk to the summit of Goose Rock.  I will sing loud in the car and dance in the living room with Lainey.  I will take adventures in the mountains even when a lot of the details are unknown.  I will cry.  I will laugh.  I will feel what I feel in the moments that I need to feel them.  I will speak and tell my story.  I will use my voice.  I will write.  I will live.

You were a slimy sonofagun, but you're gone now.  And you know what?  You taught me a lot.  You taught me to live.  You taught me to tell my story even when I feel choked by it.  You taught me that I am a survivor.

Just the same?  Stay gone, ok?


Me

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!

What's in a Name?

So as I continue to process this journey, and for whatever reason in the last couple of weeks I have been processing it a lot, I run into this question over and over.

If I can't call myself a cancer survivor what do I call myself?

 I know I've processed it here before....  but here I am still processing it.

As I said in an earlier post, at least one of the people involved with my care at the NIH will go on the record as saying that she considers these tumors cancer from the start.  I don't know though if all of the 'experts' on pheo/para would agree with her.  I know most of us patients continue to use the 'benign until proven malignant' nomenclature.  I know that most of the information online reflects that as well.  "Benign neoplasm," is a phrase in most articles defining pheos and paras even in the ones that will go on a few sentences later and explain that you can't tell which ones will metastasize and which ones won't and that lifelong surveillance is recommended.

The thing is, as I figure out my feelings about everything post Tomas and as I jump into the 'rest of my life' phase, I FEEL like a cancer survivor.

Even as I say that part of me gets scared that other survivors who have faced chemo and radiation and the like would feel slighted by my taking on that title.  I fear that they would think I was an interloper.

On the other hand, if I should progress to a point with this disease where I would NEED chemo and radiation and all of the information out there agreed with the 'canceriness' of it all, my disease would be deemed 'incurable,' with a five year survival rate that I don't really like.  Which is pretty much a version of the scenario that all cancer survivors who have gotten past initial treatment fear, isn't it?

In my brain what I had was like an early stage cancer.  It was localized.  We got it out.  We hope that means it won't spread.  With pheo/para, the good news is that often they don't.  Still, we watch.  And we wait.  Because it could.

I don't even know what to say and how to phrase things when it comes up in conversation.  Despite the fact that it's certainly not information that I try to lead with when I meet someone, it comes up eventually when I get into a certain point of relationship with somebody.  Do I go with a vague reference to having had 'a tumor.'  Do I ask for the inevitable glaze of 'what in the heck are you talking about?!' and go for the gold and say I had a 'paraganglioma?'    And the question that always, always comes up is, "So was it cancer?"  

I watched the movie 50/50 last night.  Despite the annoying Seth Rogen style of humor, the parts of it that got to me, got to me because I related as a survivor.  The articles that I read and information that I find that help me most make sense of how I'm feeling are articles about cancer survivors--especially cancer survivors my age.

They talk about feeling foreign and apart from others my age who don't have serious health concerns even on their radar.

They talk about scanxiety and how every time you have to go in and get tests your emotions shift and your short or sad or anxious because...  again you're waiting for the shoe to drop.  People reassure you and tell you that everything will be fine and then feel vindicated when everything really is, but as someone who had to enter the journey in the first place you know that at any time the tests might come back different.  It could have come back.  It could have spread.  You could have a totally new kind of cancer.

They talk about being hyper aware of every ache and pain and having a 4 point mental check list to decide whether or not what you have is serious enough to warrant going to the doctor and risking looking like a hypochondriac.  Again.

They talk about that expectation that everything will be back to 'life as normal' except that it doesn't quite work that way.  There are lingering effects--even minimal ones--that serve as reminders.  There are the emotions.  There are the feelings of vulnerability.

So I identify with and find comfort in the words of cancer survivors but because of the definitions on Web MD and Wikipedia, I can't completely consider myself a comrade in arms.

And maybe I'm not one.  Maybe it would be disrespectful or misleading to say that I am.  I didn't do chemo or radiation.  I know how unspeakably hard that is.  I walked that journey with my Mom.  I've supported others in it in various capacities.  I know that's a part of the deal that I was lucky to get to dodge.  I wouldn't want a cancer survivor to feel that I'd put on a t-shirt to be part of their club if I hadn't actually walked the walk.

But, then I think.. even though I had a 'cut and go' kind of tumor, I spent plenty of time with it.  From diagnosis to surgery it was a full nine months.  Then a post-op infection.  Then news of another 'nodule' to look into.  Questions about genetic tests.  Here it is almost a full two years later and I'm just now getting the loose ends of all the tests that were done tied up.  

My next scans will be at the NIH this summer.  My life will indefinitely include a yearly pilgrimage to that medical mecca to get checked over and scanned and scrutinized.  And I'm grateful for that.

But at the same time I'm left saying what I said about it all the very first time:

It's a big deal to go that far away because of something that is or was wrong with your body.

I survived something and it wasn't just a case of the sniffles or a minor everyday medical procedure. 

The most relatable thing that I can grasp at to relate the thing that I survived to IS cancer.

So if not that one...With what camp can I align myself?

Maybe it's not important.  Maybe the important thing is that I'm a survivor and that whatever you call what I had, I came to the other side.

But maybe it is important.  Maybe it's a door way into other people understanding why I have the emotions that I have.  Maybe it's a way to identify with others who have been through similarly difficult journeys.  (And all of this doesn't even get into my convictions that the word 'benign' in conjunction to these tumors seems to cause doctors to act less aggressively and take symptoms less seriously at times).  

So I really want to know...  Given the trajectory of my follow-up and the possibility of this disease rearing it's head again...  and given the ambiguity of the terminology and the open-endedness of the 'benign until proven malignant' mentality...  And given the fact that I had a tumor removed 3000 miles away from my home and am left with a head full of questions and more than a few lingering fears and anxieties about more tumors and illness in my future...  What the hell am I, if not a cancer survivor?  What other classification deals with these question marks and recurrent medical pilgrimages?  With what other people group could I possibly identify to make sense of the feelings and fears and anxieties (and even feelings of pride) that I have as a result of my medical journey?  

It is Finished

I had mail in my mailbox from UW yesterday.  I was incredibly surprised to find a note from my endocrinologist, Dr. Desantis, saying that my genetic testing results for the VHL mutation were in--at least the preliminary one--and the gene sequencing was completely, "unremarkable."  I was tested last Monday, so it knocked my socks off to get the results that fast.

That means I tested negative for VHL.

That's the last of the tests for the genetic mutations.

I do not have any of the mutations for which I was tested.

Tomas seems to have been a random freak occurrence with no rhyme or reason behind his showing  up.

And on Good Friday of 2012--a few months shy of two years from all of this starting, "It is finished."  That's the last loose end to tie up.  Unless something new is discovered down the line, it appears that I am negative for all of the genetic anomalies that cause these tumors.

This is very good news.

I don't think that things will ever really feel finished.  I will always have questions.  Why did it happen when I was so young?  Why did it happen at all?  

And there will be follow ups yearly or bi-annually.  And with each of those, my heart will quicken and I'll wonder if we're about to learn about something else that will knock us for a loop.

I was told at my last appointment that mutation or no it is now assumed that I have a predisposition to grow these tumors.  Because...  Well, I grew one!  

But all the questions that can BE answered have been answered.  Tomas is gone.  We have no reason to believe that he was the result of any genetic wonkiness (though I gotta tell you, mutant genes or no, I come by my weirdness naturally ;)).  

The i's are dotted.  The t's are crossed.  Now my job and the doctors is just to keep it that way.

BE Rare, SEE RAre

This is cross posted at Stumbling Barefoot.

I was reading a devotional yesterday by Lysa Terkeurst  and in it she relates a conversation she’d had with a friend.  Her friend had been encouraging her to stay the course on something hard, not for outward rewards, but because she wanted to please God.  She said these words to Lysa:  ”Be rare.”

Rare.  I have a funny relationship with that word.  Most of you know that in June of 2010, when I was 16 weeks pregnant with my Lainey, I found out that I had a rare tumor called a paraganglioma on my carotid artery.  When the doctor called to give me the news he literally had to look it up on Google and Wikipedia to give me any information about it.  It was that rare.  I’ve read figures that say 1  out of every 100,000 people will have this tumor and figures that say 3-8 out of every million people with get a pheochromocytoma or a paraganglioma.

A year ago today I had that tumor removed at the National Institutes of Health (which is, incidentally 3000 miles away from my home  ).  If you want to read that story check it out over here.  Today is my Tumahversary.

Everybody feels ordinary sometimes.  Every body feels like they are ‘nothing special really.’  Like there is nothing notable about them.  When I was diagnosed, suddenly there was something notable about me.  It made doctors look at me with interest, scrutinizing me like I was a lab specimen.  I could see them get excited and could almost hear them bragging to their cronies, ‘I had a patient with a carotid body tumor today!’  I thought for a good part of the year that perhaps I had underestimated ordinariness.  Truly, I think one of my biggest lessons of the year was to NOT devalue those things that are ordinary.  That every moment is precious if simply because it comes around only once in all of time.  The ordinary moment truly is, it turns out, rare.  In this way I’m learning to SEE rare, though I do  so VERY imperfectly.

But I think another lesson that God is teasing out of me in all of this is the challenge to BE rare.  Just as Lysa says.  Do I want to be the Zebra the doctors get excited to see at office visits because of my strange medical history and dogged insistence that we continue to be vigilant?  No.

Do I want to be the girl who is less afraid to take risks?  Less afraid to stick her neck out?  Less afraid to play the odds and believe that they could fall in my favor?  Less afraid to try even though I might fail?  Yes.  That’s the kind of rare I want to be….  the kind of rare that Lysa’s friend was referring to.

Did I tell you that I started entering contests and raffles this year?  I always saw myself as the girl who didn’t have the luck for those sorts of things.  I always sat and watched other people’s names be drawn out of a hat.  I never thought it was worth it to play the odds until the odds played me.

Now I give it a shot.  I’ve even won stuff.  Free books, jewelry, raffle prizes at MOPS, giveaways.  I figure if I’ve got 3-8 per million look, I might as well try to use it in my favor.

I’ve learned to stick my neck out…  to be audacious.

I want to be like some of the incredible friends I’ve met on the journey.  For some of these people those ‘improbable odds’ really socked them.  Not only did they get rare tumors, but they got rare tumors that recurred, or metastasized or were genetic.  They had the odds stack up against them and survived over and over.  They hike mountains and go mountain biking and boldly knock on doors to fight for themselves or for others who also play the lottery of life and come out with the improbable.  I want to face the scary stuff of life and come out swinging and still loving life, like these friends.

I also want to be like the gentleman I saw in the Naval Hospital Pharmacy this week.

Everyone at the Naval Hospital Pharmacy is cagey, impatient, tired of hurry up and wait and then more waiting.  We’ve all been to our appointment, or waited in Urgent Care for too long.

But this gentleman had a sparkle in his eye and he spoke with  kindness and cheer to everyone he saw.  He made his way up to Carolyn and I (we were getting medicine for an ear ache after a trip to the Urgent Care) and asked her and another little girl sitting across from us if they listened to their mamas.  They nodded shyly and he asked them if he knew why they should listen to their Mamas.  And then he told them that it’s because their Mamas love them, and because God asks us to listen to our Mamas and Dads.  He pulled out two golden dollar coins and gave them to the girls for being good listeners and then turned to me.  He told me that he thought I had one of the hardest and most important jobs ever and that he was grateful that I did it and took it seriously.  He, a Navy veteran, essentially thanked ME for my service.  As he walked away I watched him approach other service members and retirees with a kind word for all of them.  He was very much like the guy in the short film Validation just walking around giving encouragement to people.

What struck me in that drab environment full of impatient people just tired of waiting and barely masking their frustration in that was that this man was being rare.  He chose a different path.  Instead of blending in with the grey seats and the grey people surrounding him he was a flash of brightness encouraging those around him.

I’m on the cusp of a few changes that need to be made–as we all are often.  Hard changes, but the every day kind.  So many times I would get overwhelmed at the enormity of things.  Make excuses and say, “It’s unlikely that this will ever really work so why bother?”

It’s beginning to occur to me–I can make the choice to be rare.  I can let this challenge me to be audacious.  I can make the choice to stick it out.  I can make the choice to do the things I do, not for external validation, but to honor God.  I can make the choice to be a ray of light amongst grey drabness.  I can make the choice to stand up for what I believe in even when almost no one else sitting around me does.  I can BE rare in all these ways too.

Getting something “rare” is teaching me to BE RARE and to SEE RARE.  It’s teaching me to take the risks, and try, though it seems like failure is most likely.  It’s teaching me to SEE the exquisiteness of every moment because they all come around only once.

I’m one year out from surgery today.  It’s my Tumahversary.  And I am thankful that the lessons it took me so long to see and give words to are emerging.

Backwards Relief

If  you've been reading here long you know the question of whether or not Tomas and Pheochromocytomas and Paragangliomas in general are considered 'cancer' from the start has long bugged me.  The literature that can be found says 'benign neoplasm' and 'non-cancerous' over and over.  Indeed, some of the NIH's own informational websites even say 'non-cancerous.'  But...  Something has always struck me as troubling about that.

"Regionalized" disease does not necessarily mean that the disease will not become malignant.  It does not mean that the disease will not recur.  The NIH especially, and other institutions increasingly, admonish their patients to have LIFE LONG follow-up because the potential for recurrence and metastasis exists for years--even 20 or 30 years--down the line.

So I asked the Pheo protocol coordinator at the hospital where I was treated  flat out-- Is this stuff cancer?  When is it considered cancer?  Is it always considered cancer or is it only called cancer at a certain point?

And Karen called today just to address that question because Karen is awesome like that and she said, "It's metastatic when it's spread to a non-chromoffin site.  It's recurrent if it comes back in the same place or in another chromoffin tissue site."

And so I said--, "And is it cancer?"

YES.  YES.  YES.  It is cancer.  According to the NIH Pheo-para protocol, it IS cancer.  It IS cancer from the beginning.  And doesn't that make so much more sense than "Well it isn't cancer....  but it could be cancer....  and you really don't know if it's cancer until it spreads....  and then it's definitely cancer and we really have limited ways of treating it."

And so, I was relieved today to find out that I've had cancer.  My mother, who always had a colorful vocabulary would use the word 'bass-ackwards' to describe the fact that I am RELIEVED to know that I have had cancer.  That's MESSED UP, right?!!!

Except...  that when you have a disease that 'isn't cancer until it is cancer' you don't fit in any boxes.  And if you have a disease that Wikipedia and Google tell you repeatedly is a "generally benign neoplasm," when doctors are talking to you they tend to not be real concerned.  They tend to be a little lackadaisical.  They tend to tell you that you have nothing to worry about.

Which might be true.

Unless it isn't.  And then, you could find yourself in the position of thinking that you were in the clear for years and those doctors who were so confident in their 'almost certainty' that these tumors are benign could have pointed you in the direction of not needing regular scans, or of scanning just a part of your body and not the whole thing.  And you could find yourself with "All the way cancer," and you might have missed precious time to fight that 'all the way cancer' because of misinformation that told you everything was 'probably' over and done with.  (Edited to add)  I think it's a relief to me because some how calling it 'cancer' gives it the gravity and seriousness that I feel is warranted for this disease (whether it's been called that or not).  A doctor and a patient will react differently to a 'vague generally  benign neoplasm' than they will to a tumor that slow-growing and low metastatic potential not-withstanding is called cancer.

It is a relief to not be in the no-mans land of disease.  It is somehow a relief to know that 'cancer survivor' is nomenclature that describes me.

It's backwards that I'm relieved that it's true.  But I am.  And as a patient I wish that this was the accepted definition of Pheo and Para from the start.  I wish that understanding would would start to trickle out of the NIH and into the consciousness of Endocrinologists and Head and Neck specialists the world over.  If it WAS the accepted definition from the start I suspect that fewer doctors would allow themselves to be so lackadaisical about it.  My second surgeon who I saw before our decision to go to the NIH--and this guy is one of the world-class head and neck surgeons and one of the most respected head and neck surgeons probably in the country--told me that the procedure to remove Tomas was basically "Elective."  That my tumor didn't really need to come out because it was "probably harmless," but because of it's location near nerves and blood supply that it was considered best practice to remove them anyway.  I think he said it to make me feel better.  Instead I felt dismissed and confused at the vast chasm of difference in the concern about these tumors that I was seeing between institutions.

If it's backwards for me to be relieved that I've had cancer (and I'm as relieved about the 'had' word as I am about the 'cancer' word), then I'm ok with that.  I WANT doctors especially to know that we NEED to have continuity in understanding about these tumors.  We need to have a standard understanding.  If the NIH Protocol defines Paras and Pheos as cancer from the start, I am ok with intellectually accepting that definition too.  After all they have seen thousands of the things where most specialists have usually only seen a handful.

I had cancer.  I survived paraganglioma.  I am a cancer survivor by the NIH's standards.  And while perhaps that should scare me under a rock instead of settling something deep in my brain for me, I'm ok with it.

    

The Long Short of It

Just so I have a summary of the whole story some place...  Here is the summary of the Tomas the Tumah blog in a long but shorter form.  ;)

In the spring of 2010, soon after I found out I was pregnant with my third little girl, I noticed a lump on the right side of my neck.  I tried not to worry too much, figuring it was a lymph node.  At my first OB appointment when it was still there, I asked about it and was told to give it another month. Sure enough, a month later it was still there.  So my doctor who was a great mix of watchful and proactive ordered a neck ultrasound he told me to rule out lymphoma.  During the neck ultrasound I remember the ultrasound tech asking if I felt the pulse in my neck in any strange sort of way.  I thought it was a weird question but told him I didn't.  My doc called a couple of days later and told me I had a carotid body tumor/paraganglioma.  It still makes me laugh that as he was talking on the phone with me he was looking it up on Wiki and Google himself to find out what exactly I had.  

We decided to call the tumor 'Tomas the Tumah' because we are weird and twisted and because it is more fun to laugh then sit there scared.

I went through a few referrals with doctors who hadn't had much experience with paras and pheos and someone  with either Pheo Para Alliance or the Troopers reccommended I check out the NIH.  I haphazardly sent Dr. Pacak an email just asking for his opinion about how to proceed and was gobsmacked at the quick response I got and their willingness to take on the case.  We evaluated our options (since we live in WA state and the NIH is all the way over their in Maryland ;)) and decided to go there.

In the meantime, I had the rest of the pregnancy to contend with.  I was initially told that since CBTs are usually non secretory it was a non issue.  Some chats with the folks at NIH and one visit with a really rude anesthesiologist later resulted in me being referred to a high risk OB in Seattle, so we started the weekly two hour trek to see her.  The concern was that the stress of labor would cause a hypertensive crisis either from compression of the artery, or from Tomas the tumah 'waking up' as they sometimes do.  Luckily the doctor was amazing, truly amazing, and despite a snowstorm the day of my induction, a flat tire on the way to the hospital, and a long painful induction (36 hours)  she was born in the early morning on Thanksgiving 2010 while snow fell outside.  

Two and a half months later, we flew out to NIH for a whilrwind week of testing followed by surgery the next week to remove Tomas.  I ended up with a ruptured ear drum and an ear infection during the week of testing and a bladder infection the night before surgery.  Small potatoes in the long run, but at the time it was just so frustrating.  The surgery went well and we flew home.

On post-op day 16 I noticed a lump at my incision site.  I went to the doctor the next day and was put on anti-biotics.  The lump kept growing and getting more painful.  The doctors at our local hospital didn't want to touch me so they told me to head up to the ER in Seattle.  By this time, I looked like quasi-modo only with a lump on my neck.  It was really grotesque and upsetting and also painful.   I waited 9 hours in the ER without pain meds (because they were afraid to give me anything between the possibility of surgery and me breastfeeding) for the ENT surgeons to decide what to do with me.  Just as they decided to open and clean the wound there at the ER bedside, my incision burst open.  Then they finished the job and cleaned it out (which hurt.  As bad as natural childbirth.  I'm just sayin').  They put me on massive doses of antibiotics and I hung out in the hospital for a couple days to make sure the infection was gone.  On my return trip to the NIH I was told that a post op infection after a CBT had never happened to ANY patients the doctors there had ever seen.  We have started playing the lottery.  ;)

We found out at that time from NIH about a nodule on the other carotid artery.  We finally were able to navigate the insurance gauntlet of military medicine and got a referral to a great endocrinologist and found a local doctor which I saw for the first time last month.  They evaluated the nodule on the left carotid and told me that they believe it to be a lymph node.  I'm really happy with that news, BUT cautiously optimistic.  I am determined to be vigilant to make sure that's all it is and to ensure that nothing else 'pops' up.

So far I'm not a 'mutant' (no genetic mutation has been found) but we're waiting for results of more genetic testing to come back.  

Even though I've 'only' (perspective is a funny thing isn't it?) had this one tumor on my right carotid so far, it's been a pretty bumpy ride.  I'm always in awe of the people in these groups and how much they have endured.  For now I am trying to grasp the idea that I am a survivor (and I am PROUD to be a survivor!), and move forward with optimism and positivity.  I don't know if this will be the only chapter in my paraganglioma story or if there's more to come, but I'm grateful that I've been given the chance to see the amazing doctors that I have and I'm grateful for the support and amazing friends I've found in online support groups for this zebra of a disease.