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.