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.

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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

I don’t think there are false alarms in Cowden Syndrome.

But who knows, maybe?

In continuing from yesterday’s appointment, I also have elevated liver enzymes.

…<breathe>…

I have a fatty liver.  Have had for many years.

And, to my knowledge, I don’t think liver cancer is associated with Cowden Syndrome.

But, I don’t know much.

Who knows, maybe?

My doctor said that I know more than him when it comes to this Hereditary Cancer Syndrome.

I “joked” with him that I would be the first patient to present with liver cancer.  Like Chandler, I make jokes when I’m uncomfortable.

And, I’m not entirely convinced I won’t be.

So between my thyroid and liver, I feel a heavy burden upon my shoulders.  Heavy.

  •  My understanding is that maybe my liver enzymes will be back to normal soon.  The next step on the agenda is to have them retested in December.  If the results are still high, then an ultrasound and (possible?) hepatitis blood panel among whatever else my doctor wants/needs will be next.
  • There’s a possibility that my detectable thyroglobulin was a fluke as well.  I’m getting that rechecked in a few hours and if (when?) the levels are normal that’s a fantastic thing.  But, doesn’t explain away the new tissue in the right lobe area of where my thyroid used to be.

Happy Freaking Friday to you, dear Readers!  ❤

Oh crap. You’re not joking.

Words I actually said to my Endocrinologist today.

1. I had thyroid cancer and 2 surgeries in 2003 and ’06. My thyroid is “supposed” to be gone because cancer, papillary.

I’ve always had some remaining tissue in my left lobe area and no doctor has ever given a rip about it. The Endos just monitor it; meh, that’s fine with me.

My thyroidglobulin levels have always ALWAYS been undetectable. Until today. And I have thyroid tissue/nodule/lymph node in my right lobe. Oh, and that tissue on the left has grown.

Blergh. More later.

some days can suck it

You know what?  Some days just SUCK.  Plain and simple.  I’m dizzy.  Nauseous.  Bored.  Angry at myself.  Frustrated.  Worried.  And on and on…I kinda only realized TODAY that some days are just going to SUCK.  And, I did quite a bit yesterday, so maybe that could be why today blows?

Doesn’t mean I’m doing it wrong.  Or that I am bad or less than.  That it’s my fault I feel like garbage. Or that the brain tumors are growing or that my elevated liver enzymes mean anything BAD.

This is just part of my “new normal” – I’m going to feel like crap all most days.  I just am.  Period.  I guess the sooner I get on board with this the better I’ll be.

At least, I should start convincing myself of that.

no panic

I saw my primary doctor yesterday, who I shall now refer to as the “Queen of Calm”. 

QOC had my lab results that another doctor ordered.  (All my docs order labs for me, sometimes duplicates too).  Just depends on the day or the appointment.   🙂

We went through them and at the end of our convo QOC tells me, “Oh, but your liver enzymes are elevated.”

She said she’s not concerned.  We are re-checking them in 3 months.

If QOC isn’t concerned about it, then I shouldn’t be either, right?!

Gah.  Nope.

I came right home and Googled, “Why are my liver enzymes raised?” and a few of the first links I read went right to Pancreatic Cancer.

One of my relatives passed away from PanCan.

Is there “data” on whether Cowden Syndrome affects the liver?

Welp, there wasn’t “data”, per a horrible GI doctor I once saw, that esophageal issues are related to CS.  And, yet I was referred to a surgeon discussing a possible esophagectomy.

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Can it be December already?

 

 

 

 

 

What do you do when you can’t…?

For Pete’s sake, I have Cowden Syndrome and Lhermitte-duclos Disease and can’t think of anything to write about today?  Eeeeeesh, that’s weird.  I just spent 20 minutes looking up “Blog post ideas” and got sucked into the black hole of competitors and marketing?  Baha.  No clue.

I have some news that I am debating about sharing here.  You guys are the greatest and I know you’ll be supportive and happy for me! ❤

I decided to join a few books clubs and I am very excited to go to them.  I was a huge reader before diagnosis, but then I put it away for a while because it became so challenging for me; and in fact it still is.  But, I know reading is good for my brain so I am thankful to have found my passion for it again.

I ordered the books online and can’t wait for them to arrive.  I’ll share them with you soon.

Fall is just around the corner; I cannot wait.  Which then leads to Christmas time which is brain scan time.  Blech.  Saw the oncologist a few weeks ago and have a mammogram and kidney scan coming up quick.  I wish I could tell you I am a pro now at these appointments, but haha, nope.

I do not want to ignore my feelings, but I then wonder am I doing myself a dis-service by not writing about them? I can’t will them away; my thoughts or what I’m experiencing.  It’s a bitter pill for me to swallow as I am acutely aware of how many walls I am running into because of my wonky balance issues.

Soon enough I will write about the current brain tumor/surgery/symptoms I am experiencing.  Not tonight though.

Oh one more thing.  Have you watched this showI love it so much I cannot stand it!

 

Past Present Future

I long for the day when July 27 will be just like any other day.

Not today. I’m not there yet.


 

 

 

 

Remember

I remember.

So today I did some good stuff:

Facial.

Cupcake.

Massage.