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.