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.

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.  

But It's Not Cancer Right???

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Really.  It’s not. 

You don’t believe me, do you? 

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

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

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

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

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

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

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

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

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

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


Could be....

The really Rare Luck I've got

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

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

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

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

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

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

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

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

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

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

Processing Tomasito

Suddenly, cool, calm, and collected Val has gone on vacation (Andrew would dispute that cool, calm, and collected Val ever resided here in the first place...).  In her place is stewing, gloomy Val.  I don't like her as much.  Since we found out about "Tomasito," (the little guy on my other carotid has received his Val-nomer) I've been feeling pretty gloomy.  This cinches the fact that this is something that I'll be dealing with indefinitely.  As in the rest of my life, which I hope will be long.  I had high hopes that maybe I was going to be in the 'sporadic' group of paragangliomas--that there would be no genetic mutation at the root of this and after Tomas I could be done--but this little nodule means that this is likely not the case.  I'm finding that tough to swallow.  I don't want to do this again.  I don't like even the shadow of a possibility that my kids would have to deal with this either...

(Karen at the NIH actually said that "(If I have a mutation) It's not unlikely that you will have slow, clunky tumors growing throughout your body.  No big deal.  We just watch them and deal with them." What an interesting thought.  I'd never thought about a tumor being slow and clunky.  I guess slow and clunky is better than other prospects though...)


On top of it all, we have to figure out how to balance the rest of our life with trips to NIH and Tomasitos and potential clunky tumors.  Did I mention that we're a Navy family?  That we're up for orders?  That Andrew is heading back into Sea Duty and we're supposed to have orders in hand right now, but don't because we were instructed to wait on all of this Tomas-y stuff to know what my Exceptional Family Member Program status would be?  That we might be moving?  That maybe it would be a good thing to move to be closer to the NIH?  That maybe it would be an awful thing to move because we have a fantastic support system here, a home that we love, and stability?  (And did I mention that I'm a horrible mover?  I mean for a Navy wife I'm a horrible mover... )  I guess the truth of the matter is that about now I'd be panicking about orders and heading back to Sea Duty anyway, but adding in Tomasito and a body that is most likely predisposed to growing tumors for a hobby makes that all just a little more overwhelming. 

For most of the Pheo-para folks out there news of a mini little nodule guy like Tomasito would be something to just take in a stride.  I feel like I'm over-reacting by feeling so gloomy about it all.  And the truth of the matter is we still don't know what our genetic testing results are so we aren't entirely sure exactly what we're dealing with.  I should really wait to pull out the gloomy face til we have the whole picture, I guess.  I am a pheo-para trooper light-weight though.  I shouldn't be freaking out.  I shouldn't feel gloomy.  BUT I DO!  I confess to my light-weightiness and promise to feel appropriately ashamed for it.  Right after I bury myself in my Kindle and eat chocolate for a few days (by the way...  we're seriously lacking on chocolate around here.  I really need chocolate.  And fruit...  which would be better for me to hole up with than chocolate, but really let's just be realistic.  Also toilet paper....  *sigh*  If only growing a baby nodule named Tomasito was reason enough to avoid the grocery store...).

On the positive side of things:  1)  After my Mama got sick when considering my dismal family history, it occurred to me that it would be nice to have a reason to have scans from head to toe periodically to make sure I didn't have anything weird growing inside of me.  Guess what?!  I GET TO NOW!!!  2)  Tomasito is a tiny little guy.  He should grow slowly.  3)  I think Tomasito is a great name and it's even more fun to say than Tomas.  4)  D.C. is a nice place to vacation.  Now I'll have a reason to go there twice a year!  5)  I already have some of the best people in the world on the case.  6)  Andrew's command has been awesome and we have a lot of people looking for answers for us on the juggling of it all.  7)  The ever-present joy of blog-fodder.  8)  I'll never have to decide on WHERE to go for a family vacation again.   

I guess we just have a lot of balls in the air right now and that this season, like so many others that we've weathered, is just "fraught," and that hopefully other seasons will shake out that will be less "fraught."  We're moving into a time of pretty major transitions on the heels of a time of pregnancy and gorgeous new babyness and surgery and weird diagnoses.  We're trying to figure out which way is up in all of it.  I guess I need to give myself some room to be in all of that.  The good news is I do have The Rock of refuge and strength to cling to.  I'm clinging.  I'm glad that He holds me fast even when the fingernails by which I've been hanging for a while give out.  I am glad for the moments of peace that passes all understanding when they come.  I am glad that my rock waits patiently for me to walk through the gloomy feelings that I  have to get through first. 

Stay tuned.  The Tomas-saga continues.  And feel free to send chocolate.

What We Know Now...

Trip two (short though it is) to the NIH has gone much more smoothly thus far than Trip 1.  We've figured out how to get around to where we need to go both inside and outside the hospital.  (The lab rat is starting to beat the maze!!!)  There were far fewer  worries both in and outside the hospital in general this time around.  I knew how to get to all the places I needed to...  Well mostly.  I have had to ask for directions once, but I was headed in the right direction!  So we've learned a lot at this point. 

We really only had to come for scheduled labs and a follow-up appointment. It was certainly the longest trip I've ever taken to a doctor's office, I gotta tell you!  But, though that felt frustrating to begin with, in the end I'm glad we got here.

So what do I know now?

1)  Arriving during daylight  and when the shuttle to the airport is still running is a GOOD thing.
2)  Security is easier to get through with badges in hand.
3)  How to get to the spot on the 5th floor where they do the supine blood draws
4)  That the NIH can actually take more blood than a Red Cross Blood Drive one tiny vial at a time.
5)  Having a hep-lock for an hour is better than having one for days and days.
6)  How to find the GOOD gift shop
7)  Where the cafeteria is and what time NOT to go...  and also that they make decent dessert
8)  I can appreciate the wonder of NIH a lot more readily when I'm not panicked about impending surgeries, pre-op sickies, breastfeeding bungles, or people who are freaked out by babies being present (though I understand that was partly out of concern for her).  It is an amazing place where miracles happen every day.

As for the serious side of things...  The follow-up appointment was also full of information. Most of it confirmed what we already expected. But still, some ground solidified.


First of all, I am again a medical rarity.  In fact, I'm a medical rarity among medical rarities.  That mean post-op infection that I had?  It was the first one that Dr. Pacak has seen in head and neck surgeries in his 12 years of doing this.  I was the first patient to sprout an infection after this particular procedure under Dr. Kebebew's care.  This apparently happens so infrequently there has been debate about whether to even bother administering antibiotics before and after surgery.  They said in these  types of operations, an infection happens in 1 out every of 2,000 or 3,000 cases.  I gotta tell you.  I'm ready do stop being special.  The docs were all very nice about it all and sympathetic about the extra ordeal I'd gone through.  And one doc--He told me to go get a lottery ticket.  Like yesterday. 
 
Secondly, we got the official word about the pathology of the tumor.  It was well-encapsulated.  It hadn't invaded any other tissue and didn't have a blood supply. That means that it doesn't "look" like cancer.  This is really good news. The doctor was sure to remind me though that you just can't tell with these tumors.  Even the ones that don't "look" like cancer when they are removed may metastasize years down the line.  They all have the potential to be malignant, but you don't really know until you know.  Dr. Kebebew suggested that in light of that I get follow-up scans yearly. 
 
Third, when we were here last time around and the Endocrine Doctor on my case was going over the scan results she mentioned a "possible" nodule on my lung and another one...  bum bum bum....  on my other Carotid Body.  We asked everyone we saw about those findings today.  The lung nodule is most likely 'no big deal.'  A very large portion of the population has lung nodules.  Nodules on the carotid artery are...  well, you know...  less common.  And I'm pretty sure things like Tomas are really all that grow there.  Dr. Kebebew finally gave us the definitive word.  There is something there.  He was aware of it and had reviewed it before my surgery.  He says though that it's too small to do anything about right now.  The bottom line is that this 'something' needs to be surveilled as well.  He said it may start growing 2 or 5 or 10 years down the line and then we'd need to do something about it. Or...  it may just stay a 'something' and be a non-event. 
 
So the over-arching theme is...  We need surveillance of some sort for a while....  or really indefinitely.
 
The piece we didn't get today is the results of the genetic tests.  If this 'something' on the carotid is a 'something' that would eventually become another carotid paraganglioma then, from what I've learned so far, it's VERY likely that I am a 'mutant' and this came about from one of the genetic mutations.  I think that is the determining factor for whether or not they'll want us to continue in the NIH protocol, but maybe the nodule and need for surveillance will force that issue anyway.
 
Kind of a mixed bag, but all in all mostly just confirmation of what we already knew.

Praying for more smooth travels tomorrow...  And that the control tower folks at DCA are awake when we take off in the morning.  ;)  Can't wait to get home to be with my girls and for this leg of the journey at least to finally be all the way over.

Top 10 List of Val's Goobie-headedness

Ways Val has looked like a Goobie head in the last month: 

1)  Wearing high-water work out pants, white socks, and black loafers for scans at the NIH.
2)  Accessorizing with containers of my own bodily fluids on the first testing day at NIH 
3)  Forgetting to take my NIH ID badges off when I left campus
4)  Wearing t-shirts advertising major medical institutions on the campus of other medical institutions.
5)  Watching my 'not a tumah' neck swell up like a balloon
6)  Wearing a hospital gown and blue jeans for most of the day on Friday.
7)  Wearing a hospital gown splattered with Tomato Bisque soup and yogurt for the rest of my hospital stay.
8)  Big ole bandagey gauze with a stretchy band holding it in place post infection
9)  Crying in inappropriate places.
10)  Cocking my head to one side pretty much constantly post operatively

Now will someone please tell me what exactly a Goobie head is?  I don't know either...

Soup and No Sharks

So have I told you all about Louis Zamperini yet? 

Andy got me a book on my Kindle for Christmas.  It's the latest book by Laura Hillenbrand and it's about this guy who was an Olympian and then he was a bombardier in WWII.   It's an incredible, incredible story and it's basically like the worst case scenario of everything that could go wrong going wrong and someone still living to tell about it that I've ever heard.  Louie gets to the end of all of this awfulness and he comes home and is really mad at God.  Which, quite frankly, I get.  But then he has this experience where his perspective shifts and he stops seeing all the wrong and awful things that happened to him and he finds himself just amazed at the miracle that he lived through it all and he lives out the rest of his life in joyful gratefulness to God.  In Louie's story there are sharks.  Real ones and lots of 'em.  And those sharks have kind of stayed with me.  I've been trying to see the 'gratefuls' and the spots of the goodness of God in this whole journey and trying to remember Louie's attitude.  Thanks to Louie's story I have adopted the mantra, "At least there weren't any sharks."

So what can I tell you about the last week?  Basically, I can say at least there weren't any sharks.  Though I gotta tell you when Dad woke me up on Friday with news that our island was under a Tsunami Warning, I wasn't sure that one might not wash up right into my backyard.  None did. 

There was however a Quasimodo like hump that showed up not on my back, but on my neck.  For those of you who saw the picture on Facebook let me tell you that the next morning that lump had more than doubled and by the time the story was over it was even bigger than that.  Seriously....  I kept joking about looking like "Elephant Woman," but the really not funny thing was it looked really, really, I'm not kidding when I say "freakishly" bad by the time this was all said and done.

So about Tuesday of last week I started having some achy and unexpected pain at my incision site.  That evening I noticed a hard lump--it almost felt like my tumor was back.  When I woke up Wednesday and the lump was bigger I made sure to go see my doctor.  He prescribed some anti-biotics to be on the safe side and recommended I come in for a follow up in 48 hours.  When I woke up the next day, the lump was even bigger so I called my doctor to see what I should do and he said to come in right away. 

I went in and heard words like, "possible abscess, possible pseudo-aneurysm (WHAT?!  Thank God it wasn't that!), and possible hematoma."  I also had an ultrasound and got to chat with my old buddy, Jim again.  Scroll down to the beginning posts to see who Jim is.  He is a very nice chap and actually did get filled in on how things 'turned out' with the freaky Carotid Paraganglioma diagnosis he'd helped to make.  My docs conferred with NIH docs and the verdict was "probably a seroma which isn't life-threatening but should probably be checked out by someone else" was made.

At the end of the day we kind of got rolled over by a freight train with travel plans to go to the NIH the NEXT DAY.  That was hugely overwhelming for several reasons and so finally Andy and Karen my coordinator at NIH--who y'all is one phenomenal lady--helped make a more sane plan to go to the University of Washington the next day instead and we backed up the travel plans and I slept better that night.  Good thing too, because I didn't get a lot of sleep the next few nights.

So Friday dawned and we called my doc to see what the best way to get seen at UW was.  And he said *sigh* "Go to the ER." 

And so we went.

And they were very nice there.  And they gave me a CT scan and took some blood and we waited.  We got there about noon.

While we waited the lump grew.  While we waited the pain got worse.  By 7 that evening as we were still waiting for the ENT docs to decide what to do to me I was crying anytime a medical professional talked to me because the pain was so bad and they were saying words like 'surgery.' 

So we waited  longer and finally the doctors came in with a plan.  I think that was around 9 o'clock and somewhere after the time that Andy snuck out and told the nurses, "Look this woman delivered two children without pain medication and she says her pain is at 6.  Can we help her here?"  Back to the plan.  The plan was NOT to put me under general anesthetic (yay!)  but to do a bedside procedure to drain the abscess, put in a drain, and get some kick-butt antibiotics.  They explained this procedure which involved making an incision at the original incision site and ironically as they explained, the incision site opened up  by itself and began to drain on it's own.  I guess in the end that clinched the decision of how to proceed.

Andy tells me that what happened next was pretty gross.  I don't know about that but I can tell you that it HURT.  They said it would be easier than the Fine Needle Aspiration I had while at NIH.  Let me tell you I was begging for that procedure instead by the time we were done.  But we got through it.    And I got some Advil for the pain and a couple hours later I felt better than I had in four days.  The lump by the way, was not entirely abscess.  A lot of it was lymphatic fluid, I believe, that kind of was my body's way of saying, "Something isn't right, Rally the troops!"  The abscess was, however, big enough.  Bigger than I expected even with the Quasimodo lump.

I was admitted, which I wasn't anticipating or wanting, but which I know was best.  I got doses of Vancomyacin and Clindamyacin via IV Friday night through Sunday noon.  I remembered how much I love UW and especially the AMAZING, PHENOMENAL, WORLD CLASS NURSING STAFF that they have.  And I had their Tomato Bisque soup (which is also world class) for every meal that it was appropriate.  UW's Tomato Bisque soup is some darned good medicine y'all. 

We had some amazing friends back home who came to our rescue and took Carolyn and Abbie.  Andy and Lainey stayed with me most of the time.  Finally this afternoon we came home.

I'm up now trying to decide whether or not I'm having an allergic reaction to the antibiotics they sent me home with.  Right now I'm landing on the side of probably not, I just had anxiety itching, but I'm sure one way or another I'll know by tomorrow.

So the best things I can tell you about the last few days is this:  1)  I have amazing friends and family.  2)  I am so blessed by the huge army of people who have prayed for me.  And finally 3)  At least there weren't any sharks and the soup was awfully good.

Let's see what this week has in store, shall we?

P.S.  Even with the harrowing nature of the last few days, I feel like a colossal whiner when I look at the devastation in Japan.  Absolutely heart-breaking.