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*