The biopsy that never was

I’m not sure if you remember my thyroid drama and what’s been unfolding since October 2018.  To briefly recap: I had thyroid cancer in 2003, total thyroidectomy (we thought), RAI 2004, follow up surgery 2006… (finally) got diagnosed with Cowden Syndrome in 2011.  However, last year when I had my usual thyroid ultrasound “something” was found.  Cut to thyroid MRI and 2 fine needle biopsies we still DO NOT know what this “something” is.  Lymph node? Malignancy? I don’t even know what other options it could be; I just know that my doctor still does NOT KNOW what it is.

Friday morning I was set to have my 3rd fine needle biopsy.  Also, I changed insurance in April of this year, which means everything I had scheduled had to be canceled, I had do jump through new hoops to get XYZ approved/authorized, blah blah blah freaking blah.

So, I DID GET an authorization for Friday’s appointment; however, it was “coded” as an office consultation, and not a procedure.  I made more phone calls, wasted more of my time, called everyone and their dog (insurance and clinic) to tell them the authorization needed to be adjusted to reflect what was happening this morning.  Or, rather, what was SUPPOSED to happen this morning.

Of course I called the clinic this week to make sure they had the correct authorization.

“Oh, don’t worry Heather.  We will run it through as an urgent auth. but still come on Friday it will be OK.”

Oh balls.  The clinic should know me by now that I just don’t “come to visits” without making sure everyone has done their job.  I am not getting stuck with some random bill that is not my responsibility to pay.

Sadly, the clinic’s employee didn’t do what he was supposed to do from JULY FREAKING 2nd.  I called then and told him about the incorrect code on the auth. I had received.

This is so dumb I can’t even see straight.  From someone who is living with some very complicated medical conditions, I shouldn’t have to babysit all these people to make sure they do their damn job.

 

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Guest post – Meet “C”

Thank you Social Media for connecting me with other warriors who are living and thriving with Cowden Syndrome.  I am pleased to introduce you to “C”

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First I wanted to say thank you so much to Heather for being so passionate about making sure that awareness is spread about genetic rare syndromes and diseases and such. It is such an amazing thing that she is doing and helps so many people!

So hi! My name is “C” and I am a medical weirdo (my own term for myself) I have Cowden Syndrome, an AVM in my left forearm, and as an offshoot of my Cowden Syndrome I have recently started a journey with Thyroid Cancer, and I have Generalized Anxiety.

I was diagnosed with my AVM when I was in fourth grade after going to a friends birthday party, playing dodgeball with soccer balls which is never a good idea. I near the end of the game I was hit on my left forearm with a soccer ball, my left arm swole up and I ended up going to the ER that night. Needless to say none of the doctors I went to that first year had any idea what was going on with my arm, one thought it was a type of fracture that would’ve shown up in a couple days, another thought it was some overexertion of a swelling thing (I don’t exactly remember what it was called), and another one thought it was some cancer like thing. And it wasn’t. I eventually was diagnosed with an AVM and then a few years later after growing a thing in my foot I was finally diagnosed with Cowden Syndrome.

And as a result of all of this, I deal with Anxiety on a day to day basses, which I eventually got on meds to help me with.

A couple of months ago my doctors wanted to do a baseline scan of my thyroid because people with Cowden are at higher risk for Thyroid Cancer. Soo they did the scan and found two nodules on my Thyroid (one for each lobe/side). They did a Thyroid Biopsy (which ends up feeling like a huge bruise for a couple days afterword), and a couple days ago we got the results back. Turns out I have cancer, but it is undetermined how much cancer there is or what to do with it. A small part is definitely cancer, another part definitely not cancer, then the majority of it is something they can’t tell whether or not it is Cancer because of the fact that my P10 is the only thing they are picking up.

Sooo, now that I’ve told my story I wanted to just say that if you are one of the really cool people who have a genetic rarity you are not broken. Just because you are different from everyone else and can’t do some stuff that others can doesn’t mean that you are less than or unworthy of being a human being. And I know some of you probably wanted to punch me for the first sentence of this paragraph but you are really cool! You have this unique point of view that could maybe help someone else, and you have this way of thinking that helps you be empathetic to others who are struggling. So you really are a cool person!

If you would like to connect with “C” – her Instagram account can be found here.  ❤

I’m forever playing catch-up with my life

Where or where to begin?

I’m up early – couldn’t sleep – and decided to jump on the ‘ole blog because life is coming full force and at times, I can’t breathe.  Writing, sometimes, helps me breathe.

Here’s a quick recap on the last few months:

  1. In January, I lost my rescue dog.  I loved him for the past 8 months and he forever changed my life.  I was utterly gutted at his loss, but it was time.  He was ready although I never was, nor ever will be.
  2. Finally got the referral to a neurologist (that was desperately needed!) and was told I have (the beginnings of?) nerve damage in my feet.  From the brain tumors?  The brain surgeries? Huh? What else now?! I had a nerve test last month and it was hell.  The dot and the period.
  3. Do you remember the thyroid issues I have dealt with since last October?  Last month also, I had another fine needle biopsy on my (empty) thyroid bed.  (So, let’s see that’s – ultrasound/MRI/fine needle biopsy X2) – and there is STILL NO ANSWER AS TO WTF IS GOING  ON IN MY NECK! I had have elevated thyroglobulin and my doctor thinks maybe it was a technician error?  Yet something is growing (I guess?) in my neck but it’s not a lymph node or thyroid benign or malignant cells? Ugh, I’m beyond exhausted.
  4. Haven’t filed BK yet.  Found out there was some paperwork I need to submit to one of my creditors.
  5. My anxiety is getting pretty riled up and I am struggling with even the simplest of daily life tasks.
  6. I deleted my twitter account.  I don’t know why; just felt like the right thing to do.  Maybe I’ll be back one day? There are so many wonderful things about twitter, and to be honest it just doesn’t feel right watching Days or Gutfeld w/o tweeting!
  7. I have this great urge to purge (LOL).  Probably the shame and anxiety about the BK.

So, what else folks?  Do I continue this morning to wallow in shame or do I put on my big girl pants and get crap done today? I’m sure you know what I want to do.  Let’s see if I fight against my norm and do it different.

 

 

Nope. You’re wrong. You don’t win.

Results of FNA: NON-ANSWER.

The 4 samples taken from my neck were bloody messes and no one knows anything. A repeat test (fine needle aspiration guided with ultrasound) was recommended but that is a hard no from me.

Thank u, next.

Me @ waiting for the biopsy results

The Struggle Bus rolls along

I went an entire month without writing.  Buh-bye November!  See ya wouldn’t want to be ya!

I am still struggling:  Don’t have too much to update otherwise.

  1. Finally had the fine needle biopsy on my (empty) thyroid bed last week.  This was my 2nd one, so I was (properly, or so I thought) sedated and knew what to expect.  Nope.  No.  I was wrong and I don’t win.  The only positive thing was that I knew this technician, but not the doctor, and I think the tech (tried) to do me a solid by “talking” about things with the doctor – that I was able to pick up (if you get my drift….) I won’t go to the bad place here yet, because that’s been happening enough in my mind for the last 10 days already.  I don’t have a diagnosis yet, and I can speculate til the end of time because while I do know some things, I must wait to hear from the endocrinologist.
  2. Something is terribly wrong with my shoulders:  I speculate rotator cuff issues?  One of my doctors called in some pain medicine for me, and I will be honest with y’all here, Tramadol isn’t all that bad! I told my Mom a few nights ago that I’d almost rather have brain surgery again than this shoulder pain.  For real y’all.  No fun.
  3. Sometimes it’s quite overwhelming trying to manage my schedule.  In the next few weeks I have to deal with all the above, plus my brain scan and neurosurgeon appointment!

No words of wisdom today.  No positivity or self-care mumbo jumbo.  Writing.  Watching Ghost Adventures.  Water and early to bed.

Hi

It’s been a while, or so it seems. I have been a bit more active on Instagram & Twitter lately, because it’s just quicker plain and simple.

I’m struggling. Hard.

And you know what blows extra hard sometimes? What can I blame it on? How can we know? Is it my brain tumors? Thyroid cancer – and lack of thyroid hormones therein? The hysterectomy and lack of those hormones also? My regular old depression and anxiety? The effects of having my cerebellum scrambled a couple of times?

I am severely constipated. Unlike anything I can recall in years. Doing “all the right things”, and it continues to get worse and a few days ago I about passed out in the bathroom. And yes. I am drinking lots of fluids – water, coconut water, etc.

Additionally, I am extremely exhausted. Again, unlike anything I can recall at least since my thyroid cancer in 2003. I think some people think I’m rolling my eyes at them, haha, but I assure you I’m not. I just literally cannot keep my eyes open. Every time I blink (which is getting longer and more often) I am just trying to will myself to be coherent and uptight upright.

Had the thyroid MRI last week and waiting to hear.

Welp. I guess the good news is I’m not dead yet! I have to file bankruptcy at least before then.

🙄🤮

Prez of the #TeamNoSleep club

I don’t sleep well at all. And apparently Cowden Syndrome doesn’t either.

Today, I saw the Dermatologist and had a mammogram. FINALLY found out the thyroid/neck MRI was submitted and approved: it’s scheduled for 10/26/18. By the by…can a new lymph node grow when I don’t recall my “other” lymph nodes were even involved in ’03 with the thyroidectomy? Hmm.

Still hard to believe it was 7 years ago this month I was waiting for the genetic testing results to confirm I have a PTEN mutation.

Life is rough. Life comes at you pretty fast. Funny, I’m STILL trying to accept that this is now my life: struggle, fear, terror, anxiety, loneliness, Financial ruin, dizziness, etc.

I know I’d be better off if I just accepted all that crap. But call me stubborn or naive. I can’t accept those things.

I wanted and hoped for so much more in my life.

Hashtag PISSED.

What am I waiting for exactly?

So.  Do y’all remember when I saw my Endo and he told me my “thyroid” is growing back and I have elevated thyroglobulin now?  (For those who don’t remember, I had a total thyroidectomy in 2003 (and follow up in 2006) for a huge thyroid goiter.  It was 10X larger than normal on the right lobe, and 4X larger in the left.  Makes a hell of perfect sense knowing what we know now about Cowden Syndrome.)

And how this was over a week ago?

And how his office called me the NEXT day to tell me he wants me to have a thyroid MRI to decide what’s next?

And how I have to “be patient”?

I’m about to spit nails. IF YOU DO NOT STAY ACTIVELY INVOLVED IN YOUR OWN HEALTH CARE YOU WILL BE NOTHING LESS THAN A STATISTIC. THAT IS ALL WE ARE TO THE MEDICAL FIELD.

Here’s all I know as of today:

1. Referral for MRI hasn’t been submitted yet.  Full. Stop.

2. Apparently my doctor put the order as “routine”, so his entire staff is on slow-mo. Literally.

3. Said office is waiting on clarification on order from yet ANOTHER department.

4. Was told they “hope” to get info by the end of the week. THEN the referral will be submitted.

WHAT THE EFF IS WRONG WITH THIS PICTURE?! Don’t call me a worry wart either, which is what the receptionist (who had very big balls, I might add) said to me.  This is our medical system! I’m not disabled apparently, while I’m living and trying to survive with these 2 brain tumors and watching and watching with a microscope if when I get cancer!? Cowden Syndrome and LDD have ruined my life.  And continue to drag me through the mud.

Yet I’m expected to cope with this crap and bloody anxiety and pressure having to MANAGE my doctors doing their damn job? And if I find out the thyroid cancer IS back….they best be on guard because I will raise holy hell like none other. Thyroid cancer is NOT the Cadillac of cancers and should not or will not be treated differently than any other cancer.

I’m so pissed – if I drank I’d already have downed 2 shots by now and it’s only 9:30 this morning.

Meh

Mood