Record Scratch

Isn’t it amazing how things can change so much in 48 hours?  Even 24 hours?

So a few days ago I was panicking that I might have cancer in one of my lymph nodes and that this new 5 cm. mass in my right thyroid bed was b a d n e w s.

I had the CT scan Friday morning and my Endocrinologist called me late morning.  He said, per the Radiologist, that he DOES NOT need to biopsy the mass.  I’m guessing fatty tissue?  Is that part of Cowden Syndrome?  I actually think it is, at least to a point.  But, as that fatty tissue grows, then what?

Anyway, and evidently there is NOT any metastasis in my lymph node.  The ultrasound technician thought it was, or theorized there was. Regardless, I have that on the top of my list of things to ask my Endo. next week. WHAT the freak is/was in that lymph node then?

So, taking small victories as they come I am breathing a sigh of relief.

PS In the midst of all this whirlwind I had decided to put my Twitter and Instagram accounts on a hiatus of sorts. But I had forgotten I had a previous commitment on IG so I have brought that one back.

 

Urgent

8:30 am tomorrow morning I have my urgent CT scan. I feel how I did 9 years ago during that week’s time between the brain tumor diagnosis and the first craniotomy.

Trying to read. Trying to distract. Trying to stay relaxed and as calm as possible.

Month by month

I have a feeling that in the next few months Cowden Syndrome is going to show me how much of a witch she really is.

Possible nodal metastasis. Are you freaking kidding me right now?

Post 1001 or what I remember from my black-out

You know, never in a million zillion years did I ever think I’d have brain tumors, let alone blacking out, hitting my head, and taking a ride in an ambulance! Yet here we are.

This incident was just a few days ago but it seems like yesterday. (A little back story: I have something wrong with my left thumb joint. For the last few months I have been feeling a lot of pain, and I mean a LOT of pain, and a “double-jointedness” on the joint right below my thumbnail. In other words, arthritis. – SIDE NOTE: I am reminded of a story of one of my little nephews. When he was a kid he called his Big Toe his “Thumb Toe”. Isn’t that the sweetest? ❤

Anyway, back to my story: It was around 4 am and I woke up to use the restroom and I always take my thyroid pill around this time. I remember opening the lid with my left hand and I got a shooting pain (I used the word excruciating) in my thumb and the next thing I remember I’m laying flat on my back on my bedroom floor. And I didn’t crumple like a little flower mind you; I hit the floor like a lead brick. I remember somehow getting to my bed and thinking to myself, “I should yell for Mom to come help me.”

The next thing I remember I am in the restroom trying to finish my business and I remember toilet tissue in my hand. Then, I am again crumpled on the floor, the back of my head is killing me, and my Mom is in my face screaming, “Heather! Are you OK? Heather! What happened?”

She said I stood in her bedroom doorway and told her, “Mom, I need your help” and I crumpled onto the floor and she heard the thud of my head against the wall. I’m not going to lie, I’m getting a good amount of anxiety as I am writing this. I want to share this with you and also to document my life today. When I am gone I want others to know how hard I tried, especially my nephews. I want to them to know how much I love them with a love that fills a thousand oceans to infinity. How they give me more joy and the strength to carry on. How hard I tried to be positive and never give up. How hard I tried not to be bitter about my lot in life.

 

I’m always big on dates

Two years ago tomorrow, October 21, 2017, I had bariatric surgery that saved (at least part of) my life.

I’ll get to writing about that very soon.

Finally had the FNA in my thyroid bed a week ago Friday. EIGHT (8!) times my Doc. had to put that bloody needle in my neck. And DIG. A lot.

It was bloody freaking hell and I do not want to ever have another fine needle biopsy again. I accidentally took a bit more Xanax than I should have and the back office staff was kind of freaking out, BUT I HAD TO DO WHAT I HAD TO DO: and my lovely Xanax still wore off after the first needle stick. #sucks

Doc says results should be in in 10 days. I’m not lucky nor a betting woman, but if I were, I would place big money on black that there will yet again be NO diagnosable tissue.

I will let you know as soon as I do!


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Click here to shop: We need a cure!

Thank you in advance my friends, dear readers, and family!

As I write this early this morning, I have my next FNA on my thyroid. This issue has been going on for 12 months and we still do not have any answer on whether this (spot) is a lymph node, thyroid tissues, cancer regrowth, or what. My hunch is that it’s my thyroid growing back as I had my gigantic tonsils removed in the early 90’s and they are also growing back.

I have a driver. I will be sedated. This isn’t my first rodeo so I thankfully have some tips to help myself during this.

I’m not going to lie. It’s an ordeal. It’s more than just “shoving a needle in my haystack neck hoping to find the damn needle.” 🙂 The procedure isn’t for another 3 hours and I’ve been awake since 4 AM trying to mentally prepare for it.

I’m hungry. I’m tired. I should go clean my room. Happy Friday!

 

Here…

  • I don’t have to be brave.
  • I don’t have to be strong.
  • I am not alone.
  • I can be honest.
  • I can be myself.
  • I can scream.
  • I can yell.
  • I can cry.
  • I can be scared.
  • I can be myself. Truly and authentically me.

I am having another fine-needle biopsy this Friday.  Again.  On my neck.  Where I am not supposed to have a thyroid.  I road this route in 2003 and 2006; I am supposed to be done.  So what the hell is going on? I’m pissed this is still going on.  Next month will be an entire year dealing with this thyroid “regrowth” and between dumb-ass insurance companies dicking me around, making me jump through additional UNNECESSARY hoops, etc. etc. I still don’t have an answer as to what the freak is growing in my thyroid bed.

The system is vehemently broken, as I’ve said before.  And, I will say it again and again.

(Is it odd that I want it to be cancer or suspicious enough that they can just take “it” out?)

Give me another damn surgery so I don’t have to be worrying about thyroid cancer regrowth.

But guess what.

When you get a diagnosis of Cowden Syndrome worry comes with territory.

In these last 8 years I have learned that Cowden Syndrome equals worry.  There’s no way around it.

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Click here to see the shirt I created for just this exact moment.  Ironically enough, I created this when I was denied disability.  Yet how appropriate is it for me today!

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.

 

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.