Really, Really, Really, Really Good News! REALLY!!!

16 months ago I was told I had a tumor on my Carotid artery.

8 months later, I had surgery and I thought I would feel relieved because my tumor was gone.

Except I found out at the same time about this nodule on my other carotid artery.  A nodule that I was told was 'definitely something.'  And I tried not to freak out.  And I tried to be happy, but I had this shadow of fear and dread about having to do the whole thing all over again.

Four months later I got the news that I didn't have the SDHD or SDHB mutation.  And I was amazed and taken aback and confused because...  I had another nodule and it just didn't make sense.  And I tried to be happy.  But I had this other nodule, which I was sure was another tumor.  I asked people 'what else could this be?' and I never got a satisfactory answer.  All seemed to point to this being another tumor.

A week and a half ago I met doctors on this side of the country that I loved.  And I was happy about that, but revisiting that dread feeling because...  I had a nodule.  And what else could it be?  And I was going to have to do it all over again.....

Tonight.  Tonight one of those wonderful docs from UW called.  She said she'd reviewed the scans I had earlier this week.

She said she had some news about that nodule....

That nodule she said...  Doesn't appear to be a paraganglioma.  

That nodule she said is most likely NOT a tumor.

It appears to be a lymph node.  A NORMAL lymph node.

She waited for me to cheer and get excited or at least sound happy, but all I could say was, "Are you sure?  And...  Do I need to be worried about this lymph node?"

And then I got a little happy.

And then I hung up the phone.

And now I am looking at Andrew in glee and disbelief and yelling at random intervals, "I DON'T HAVE A TUMOR!!!!!"

And for the first time...  For the first time in 16 months.  That feeling of dread has lifted.  And while I am still maintaining an attitude of cautious optimism....  And while I want to have this corroborated by the NIH....  And while I will still need follow up likely for the rest of my life....

For the first time in 16 months, I go to sleep out from under the shadowy spectre of a Tumor named Tomas....

The journey isn't over, but the burden has lifted.  And I am so happy.



As a post script, I just have to mention how sad I am to learn of the death of Steve Jobs.  Steve's cancer, like paraganglioma, was a neuroendocrine tumor.  It was a NET arising in the pancreas.  These tumors and diseases are so slippery and I am sad that he gave his life in the fight.  My news tonight is good, but it just as easily could have gone the other way.  I add my condolences to his family and I pray that they would be comforted in this loss.

Bailing out of the River DeNial and Back into Appointment Land

I was having a lovely time floating in a river called DeNial and I wasn't entirely sure I wanted to stop my float, but alas, it was necessary and the outcome of bailing out was ultimately positive.

We've been on a search for local docs.  Call me crazy, but I thought it would be kind of convenient to have docs on this side of the country to visit with when needed for follow up or emergent situations that don't need the complication of last minute airline tickets.  So we slogged through that ridiculous referral process and twiddled our thumbs waiting for the appointment.

Monday was the day of the appointment, and I was feeling quite grumbly about it.  Andrew thought my grumbliness was a little over the top until I told him that the reality of the situation was, I didn't want to go to the doctor at all because I didn't want to have tumors at all, and I really didn't think it was so unreasonable to not want those.  He left me alone after that.  (Smart man!)

But alas, I'm on the Paraganglioma-train and I may as well get used to it.

So away we went.  Good things came of it despite my grumblings.  The first doctor who came in was a "Fellow."  It was abundantly obvious immediately that Fellows at UW are vastly different than Fellows at the NIH.  The Fellows at NIH are amazingly smart people, but because of the whole structure there, they come off to me as something like a 'minion' to their Attending Docs.  This Fellow though, Dr. R, set me at ease right away, earned my respect right away, and showed me immediately that she knew her stuff.  Plus, she reminded me of my dear friend, Barbara Harroun, which really cinched the deal that I was going to love her.

The most exciting thing to me about the appointment was that they asked me questions and talked about things that I hadn't even thought about. I mean...  I hadn't even considered them.  It felt lovely!!!  You gotta understand, it's not that I think that I'm such a know-it-all...  It's just that hasn't happened much along this journey outside of the NIH.  Dr. R, knew the symptoms of all the different genetic mutations and probed for hints about whether or not I might have one.  She listened to and answered my myriad question (Well...  there might have only been 12 or so).  After getting my story, and checking me out thoroughly she went to chat with her Attending.  She came back in with him (Dr. D), a few minutes later and they BOTH took on my questions and bulldogging for information.

The direction we're headed on as agreed upon that day (and may I just say that another thing that I loved about Dr. D. and Dr. R. was that I very much felt like part of my own treatment team) looked something like this:

1)  I went immediately downstairs for some more genetic tests.  We haven't ruled out all the possibilities for a genetic tie predisposition.  I could still be a mutant.  In fact, the docs at UW kind of hinted they would maybe be surprised if I wasn't.  It was really strange to just be told to go downstairs and get tested as in the beginning of this journey I was told over and over again how 'unnecessary' said testing most likely was.

2)  I have scans next week to see what is going on with Tomasito (Remember--he's the little guy who may or may not be hanging out on my other Carotid artery).

3)  They're not super concerned with my Thyroid as the biopsy I had at the NIH indicated it's probably not related to the Tomas and his kinfolk, but we're keeping an eye on it with ultra-sounds, and I'll have one of those next week as well.

4)  I'm going to meet with an ENT surgeon, not because another surgery is on the horizon, but just so I have some 'face time' with whoever may be performing a procedure to deal with Tomasito or any other Tomas kinfolk in the future.  That appointment will happen in early November.

It was such an encouragement to find folks on this side of the country who are willing to have my back.  It was reassuring to hear a plan, for scanning and surveillance.  It's also just such a comfort that they're extremely knowledgeable, competent, and compassionate.    I wish I hadn't been so ignorant as I was  searching for doctors and referrals from the get go as I'm sure I'd have found the Endocrinologists at UW to be fabulous even at that point.  I'm still grateful for my experience at the NIH and for the doors that has opened and continues to open for me.  And I'm thankful that I have those incredible doctors and medical professionals on my team as well.

The phlebotomist taking my blood was kind of fun.  He wore really colorful Converse Sneakers and when I asked him if he spent the whole day with folks who didn't look at him (because they didn't want to watch themselves get stuck with a needle), he confessed that he didn't like looking at the needle stick either.  I raised my eyebrows and said that I certainly hoped that he'd kept his eyes open when he'd stuck me!  He then offered to try again, blindfolded just to see if he could do it.  I politely declined.  :)

Let me just say though...  I <3 UW.  My experiences over the last year have all been so positive there and this experience only strengthened that feeling.  It is an incredible institution.


We'll be anxiously awaiting the results of these scans and tests and then we'll know more of where we're headed.  In the end, I guess if I had to bail out of DeNial, I'm glad we found some great doctors to make the trip worthwhile.

Where's the Tastier Tasting Food and The Smellier Smelling Flowers? What am I missing here??

I read an article recently that was titled something like, "10 Things I've Learned From People Who've Had Cancer."  It was about what you'd expect:  stuff like, "People who have cancer cherish every moment of every day.  People who have cancer don't mince words they tell you what they really mean.  People who have cancer don't care what other people think.  People who have cancer notice that flowers smell smellier and food tastes tastier."

I've decided to think of my experience with paranganglioma--since thus far mine has been/is localized--as  'pseudo-cancer.'  I didn't do chemo and there's a lot of fuzziness about the benign/malignant classification in general, but it was a tumor and I will always be looking for recurrence and metastasis.  Pseudo-cancer is how it feels.

So anyway.  I've read some of these articles and I've read things from other survivors who I really admire and I hear this theme emerge.  It's the smellier smells, tastier tastes, more colorful colors theme.

One of the reasons I feel like I haven't found my story is this:  I haven't had this major epiphany that other survivors have.  I still spend too much time on Facebook.  I still take my kids and my husband for granted too often.  I still forget to stop and smell the roses.

And so I kind of feel like:  What's wrong with me?!

Why haven't I had this experience of enlightenment?  Why am I not blissed out all the time just basking in the blessings I've been given?

Am I the most ungrateful brat of a Pseudo-cancer survivor that anyone has ever met?  Is that it?

Throughout the experience I really have tried to focus on gratitude.  And my family is pretty darned important to me and while my kiddos can and do tromp all over my very last nerve on a regular basis I adore them and I'm surprised by my delight in them daily.  Still, I get bogged down in the banal and frustrated with the tiny and frankly I don't feel like I've had a major shift in my experience and perception of life.  The changes that I sense in me aren't nearly so inspiring and touchy-feely.

My sense from these articles and from the stories of some cancer survivors that I've read about though is that they keep themselves in that head-space of sweetness and ultimate perspective.  I don't feel like I've developed any heightened sense of that perspective and I am easily led astray into being stressed out about my dentist appointment (two fillings today...  ouch!) or my lost keys or whether or not I paid the credit card bill last month.

I feel like there must be something wrong with me for not reaching this zen post-pseudo-cancer experience place of clarity.

I don't know.  Maybe I'm just not there yet.  Maybe it comes after some of the shock and fear and the initial looking over your shoulder and just plain tiredness start to wear off.  Maybe it's part of the reality that we all 'feel and deal' differently.  Or maybe it's part of the overly idealized cancer survivor story culture that has been created.  I'm just not sure.

I think that part of me is afraid that I've missed a big God message here.  Was there a sign in the sky that I was missing to tell me what the positive nuggets of this experience were supposed to be and how my character and my world-view should have been transformed?  Did I miss the boat?  Because instead of having this new higher-level perspective I just feel more boring.  I don't laugh as easily, I'm more serious and sober.  I don't quite do 'just having a good time' very well anymore.  I'm no Eeyore.  I am still looking for the 'gratefuls' and holding onto faith while I "Count It All Joy," but my happy-go-lucky got up and went elsewhere.

So...  Am I missing something?

I hope that God will fill in the gaps, if the gaps do indeed exist.  I hope that He will continue to help me make sense of it all as I process all this.

In the meantime, if you know the trick to making your food taste tastier and your flowers smell smellier, could you let me in on the secret password?  This experience was big and hard and scary enough....  I don't want to have to go through a hairier one to get that point!

How do I get to "Normal" from here?

I stumbled upon this article today with a sigh of relief.

You mean I'm not the only one?!!!  Paraganglioma not quite exactly being cancer notwithstanding, I find that I'm relating strongly to stories of how people feel after surviving the Big C.

We evicted Tomas in February, had our follow-up in March and in the meantime we've kind of been marinating in this new space.

I wish I could tell you we were marinating in normal.  But I don't feel normal.  I mean...  Tomas is gone and we finally got the genetic testing results and they were unbelievably--NEGATIVE?!--at least for the two most highly suspected mutations.  And yeah I've got little nodule Tomasito on the neck but here we are in a holding pattern which means that I should just be sprinkling fairy dust and rainbows of happiness behind me with every step I take, right???

Oh.  I wish.  I just don't work that way.  I mean....  I can be whimsical, but I've never been light enough in any sense of the word to do the whole Tinkerbell routine.  It's just the truth.

Don't get me wrong I've got the important kind of joy:  The kind that is unshakable in the face of even things like Tomas and worse because I know that I am Abba's beloved and He cares for me.  But I find that outside of that particular stream of joy the rest of my emotions can be rather variable.

I'm a girl who battles depression off and on.  And this was a tough year.  A really tough year.  And as I mentioned in the previous post there are still plenty of loose ends.  By and large I just keep waiting to feel happy and relieved and instead I find I just feel discombobulated.

I can't just "Go back to normal," because I'm a different person now.  I'm a person who has not just been hit with a serious illness as a family member, but now the dragon of cancer or at least pseudo-cancer has come knocking at my own door.  No, I didn't go through radiation or chemotherapy, but from diagnosis to surgery it was 8 full months.  Plus the post-op infection and now...  Tomasito.  That's a long time to live in the shadow of an illness.  I didn't come out unchanged.  Neither did my family.  We know now for better or for worse--and yes, some of it is definitely for better--that ANYONE can be that 1 in a million person.  We just can't take it for granted that the crazy story or difficult misfortune won't happen to us.

(On the flip-side, we're now more likely to sign ourselves up for drawings and take those surveys they give out at restaurants with the potential promise of gifts and good-fortune....  You gotta make the Zebra luck work for you once in a while!)

But I've survived.  I am surviving.  I am a survivor.  And isn't that a happy thing?

Yes of course!  But it's a sober kind of happy.  It's a deep breath, long sigh, look over your shoulder kind of happy.

I resonated so much with the article, but especially with this:

  Time to celebrate and move on, right? At least that’s what I was hoping, but it didn’t work out that way. I was glad the cancer was gone, but instead of feeling elated, I was like, “Now what?”...... Everything had changed, and I had no idea how to get back to “normal.”

I looked different. I felt different. Yet I was told to “move on.” Certainly everyone around me had done so, and they wanted me to as well. But I didn’t know how. I was confused and had no one to talk to. I felt guilty holding on to my cancer experience when everyone else was elated at my “survival,” but when it came down to it, I had nothing else to hold on to.

I can't tell you how emphatically I nodded at these paragraphs.  I mean, you could hear the proverbial BBs rattling around the boxcar of my brain I was nodding so hard.  It's hard to explain, and yet she did.  I feel guilty holding onto my experience while everyone else has moved on or is in, "You should celebrate," mode.  But I haven't made sense of it yet.  I haven't processed it.  I take a looong time to process things and I don't do a good job of attending to that job when I'm *in* something.  I need time and distance to start looking at things and figuring out how they integrate into who I am.

I subjected myself to a Mary Kay makeover done by a very good friend, yesterday.  As my girlfriend chatted about the importance of eradicating the wrinkles and 'lines of emotion' on our faces, a small part of me couldn't help but think, "Hey look--I may only be 30 and I may be Queen Frumpy who specializes in Goobie Headed fashion, but Darn it, I earned these wrinkles!"  I feel like an old 30.  A sober one.  Life has piled up high in it's sweetness and it's goodness but also in it's difficulty and it's travail.  If I have wrinkles and grey hairs already, it's because I've earned them.

I'm not saying it's all long-faces around here.  I try not to be TOO morose.  I've learned to whistle in the dark and talk in humorous terms about things that are serious, and quite frankly, scare the pee-wadding out of me. I've been told I've even elicited a giggle or two out of this-here blog.  All that said, I'm still not necessarily sprinkling fairy dust over here.  I may be even more thinkative than before--if that's possible!  I am processing life with yet another pair of lenses.  They are lenses of survivorship, but maybe survivorship isn't so much about feeling invincible after facing a challenge.  Maybe it is more about knowing your own vulnerability and the vulnerability of the ones that you love and walking on anyway.  That kind of thing is heavier than pixie-dust, and doesn't look as smiley sometimes, but I think it's still good stuff.

So I'm working on finding my way to Normal (I'm told it's a town not far from my Sister-in-law's place in IL....), but I know from previous walks through difficult times that it will be a new normal.  I can only hope that I will like the Val of the new normal a little better and that God will use the hard stuff--has used it, is using it, will use it even if there is more to this story--to His glory.

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.