Thyroids are Cool

The American Cancer Society estimates that there will be about 64,300 new cases of thyroid cancer in the U.S. in 2016. Of these new cases, roughly 49,350 will occur in women and 14,950 in men. In fact, it is the most rapidly increasing cancer diagnosis in the United States, tripling it’s past numbers. And no matter how one may view the survival statistics, each story is different, each experience is hard and I urge you to never consider it a “good cancer.” There are no good cancers.

CHECK YOUR NECK.

What Thyroid? has become my mantra and also the face of my fight against Thyroid Cancer. Brutal honesty,  a twist of wit, and paired with the good, the bad, and the ugly, is the way I roll.

With September dedicated to Thyroid Cancer Awareness (are you sick of my posts yet?), I decided to express my personal experience, trauma, positivity, inspiration, and need to feed this creative soul, the best I know how; awareness through design. By this I mean pouring my guts into writing, complimented by these sweet little thyroid lapel pins.
Who says survivors need to rock ribbons or butterflies all the time?!?

SHOW ME YOUR THYROID!

$10 / Pin (Pick your color – Pink, Blue or Teal)

$25 / For all three Colors

FREE SHIPPING in the US for the entire month of Sept.

CHECK IT —–>  etsy.com/shop/WhatThyroid 

25% of all sales will give back to someone in need of financial help via medical bills, because lovers, this disease is NOT cheap. And with so many outlets donating to research and we have yet to hear of a cure – I’m taking an alternative route for the cause.Here’s to all the fighters and the survivors. The incredibly strong humans who have made it through this long haul. To the doctors and the nurses who have given their best. And here’s to our friends and family, who have supported and loved us endlessly!

Wear this pin with pride.
With confidence.
With gratitude.

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TT 101 : What Thyroid

This Thyroid.

In the previous post, I tossed out there what a thyroid is (a gland) and what it controls (pretty much everything). What I forgot to mention is what it looks like. Picture two medium filet cuts in the shape of an abstract butterfly, kind of. Great visual, right? I do not suggest looking up Thyroidectomy on YouTube, anytime in your life. I just did.
Nasri, you are a CHAMP! And I can’t believe all that happened to my neck, TWICE.

I’ve been teaching a handful of children as of late, where and what a thyroid is. Of course I don’t go into the gory details of all the possibilities their thyroid’s future may have, but at least they are learning something that I can’t remember hearing about even in high school. Imagine that.

Then I give them a pin and they forget all about what I just said. They rather fight about who gets what color. So there’s that.

 
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Next up! All the pills. Onward!

 

 

 

 

TT 101 : The Basics

Hey babes in babes land. Have you ever thought about your life without a thyroid?  No?  I promise you, without genetics and this soft little gland, your world would be a whole lot different. It’s pretty impressive what that squishy honey does for your bod.

Oh wait. What is a THYROID, you say?  I said the same thing once.  Over the next handful of days,  let me provide you with a little more information. Maybe more than you ever intended on having. But it’s good for you. Like apples, or champagne. Trust me.
Knowledge is power!

Let’s start here  ——>
SEPTEMBER is Thyroid Cancer Awareness Month.
Which means someone, somewhere, decided this would be the perfect time of year to take your thyroid into a little more consideration and spread awareness about disease. I think three-hundred and sixty five days, on and off, is cool – But I’ll take whatever I can get.
Someone find me a soap box!

———-

thy·roid

ˈTHīˌroid/

noun

1. 1.

   a large ductless gland in the neck that secretes hormones regulating growth and development through the rate of metabolism.
2. 2.

   a large cartilage of the larynx, a projection of which forms the Adam’s apple in humans.

   
   Thyroid hormones support nearly every body system. In humans and other backboned animals, the iodine-containing hormones guarantee proper development of the brain, skeleton, and organs. Yet, too much or too little derails the body’s delicate balance causing goiter and other health troubles. These distinct regulators work alone or in cooperation with other hormones to generate energy, control cell oxygen use, and moderate many other life processes in both males and females.

   
   Almost all body functions carried out in nearly every tissue rely on thyroid hormones. Their actions and influence are so wide-ranging that vertebrates cannot live without them. Among other things, thyroid hormones specifically affect brain development; heart rate; lung function; blood function; bone growth; steroid hormone production and breakdown; sugar, fat, and protein breakdown; and some immune processes.

   ———

Well. When they put in terms like that, it sounds discussing and terrifying; but if yours works, ENJOY that little bastard! Broken down into phrases that make more sense to me, this lumpy butterfly controls how you gain or lose weight. It decides whether or not you could sleep all day or stay up all night. Sometimes you sweat like a pig and other times you freeze like a popsicle. Sometimes I feel like my heart is going to jump out of my chest. And for us creative folk, watch out! Creative blocks happen more often than not.
Those are just some relatable basics.

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OK. Since it’s 2016 and more than half of the world has the attention span of a squirrel, I am going to stop right here. I don’t want to ruin your day with too much reading. I hope you enjoyed Thyroid Topics 101.
Tomorrow, I’ll show you where your thyroid is located even if you already know.

Or decide to look it up on your own. Onward!

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Mic Check : One, Two

I realize, I’m not so fantastic at this whole blog thing. I get a vibe going and then I fall off. Which isn’t right. Because not only does this blog exist to represent a plethora of thyroid cancer awareness knowledge, experience, and reach to all my fellows who are lacking a thyroid; my intention is always, to engage, inspire, question, and provoke hope and insight that the days to come will be brighter for all of us. Whoa. Run on sentence. You get the gist of it.

 

This past week’s whirlwind of a surprise trip to Minneapolis, surrounded Julian and I with so much love and family. The energy was intoxicating and the conversations were thick. The perfect recipe for times that are meant to be and never forgotten. We crashed and celebrated a party in leu of a beautiful young woman named Carmela, who has climbed to the top of her nest and is about to hit Chicago this fall only to find herself yet again. Even more than she anticipates. She is amazing.

 

I rested my head softly those two swift nights; in the land of rolling thunderstorms and lush filled days. I couldn’t be happier. The fresh smell of plentiful greens, complimented by my urban instinct of a city dweller; I am home. Surrounded by family, swirling with chatter and positive emotions – It makes one feel whole again. All those voids that have been waiting to be filled are now complete. And as the rain pounded on the roof our last night home, thunder rolling, flashes of natural energy filling the sky; I felt so alive.
Your life and what you put into it, with time,  creates a the perfect personal portrait. The need and willingness to grasp and appreciate it all is crucial. My life, with all the good, the bad, and the ugly, is a beautiful dream that I wish to live over and over again.

 

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DAY THREE

I drank my first cup of ‪#‎coffee‬ in three days. I made it mildly weak. It was delicious. However, I drink coffee slower than the average bear. I also turn my coffee pot off, once brewed, in fear of burning ‪#‎fresh‬ coffee. Is that possible? Anyway, I had no way to heat up my coffee after I forgot about it today. I get that from my ‪#‎Grandma‬ J. Either I don’t know where I left my cup (usually in the microwave) or I reheat it throughout the day, roughly three times. I love her.

 

I’m finding it rather hard to pry myself away from Parks and Rec. SEASON SEVEN. Ep.3! I thought I would read more literature, but I haven’t touched a single piece of paper in fear of ‪#‎contaminating‬ it. I hate wearing plastic gloves. It’s gross. Andi, you’re a blood drawing queen! 💉👑

 

Over the past 72 hours, my newest, creeping succulent, that I took captive to spend four days with me, has sprouted new growth! “String of Pearls” – Check them out (no dirty jokes, please). I noticed this while I was up, designing away. Felt good to get a nice project push before the weekend and kill a little captivity time.

 

Word is – Remember that ridiculous reality show “My First Home” which was a complete made up story about us and our home buying experience? Yeah, it airs Saturday, April 9th at 12:00pm on TLC. We have made up a drinking game that goes with and 👉🏻 you MUST participate if you watch the episode, no matter where you are in this world. Stay tuned for more Information.

 

Tomorrow I sleep in, and clean like a mad woman. I’m getting out tomorrow. You know, out the joint? Yeah. That super bright and airy space that I have gotten to vedge out in, alone, for four days, poolside, in my safe little plastic wrapped, tv, and starburst filled sanctuary. I think I might do this quartly. A quartly quarantine to rejuvenate. It’s all about perspective. 😘💪🏻

 

xoxo,

 

– The girl in pink pineapple socks

🍍🍍🍍🍍🍍

 

‪#‎RAI‬ ‪#‎whatthyroid‬ ‪#‎thyroidcancer‬ ‪#‎thyroidcancerawareness‬ ‪#‎radioactive‬‪#‎thyca‬

DAY TWO

I almost slept 12 hours! But I also woke up feeling a possible cold coming on. Please no.

 

My brother made it through his surgery and home safe. Chatted with him earlier // Side Note : ‪#‎Wisconsin‬ was on the desert news tonight due to snow. Stay warm, ‪#‎Cheeseheads‬!

 

I’ve almost finished every season of Parks and Rec. I’m addicted. I never watch t.v. and feel like when I finally finished, it’s going to seem like I lost some new friends… Anyone else have that with shows?

 

I pegged a little work in too and @____mshl came over to wave at me through the window. Frank literally tried to shove his face under the door.

 

Tomorrow I’m going to throw myself at an early alarm, a cup of coffee and pile of design. ‪#‎DayGoals‬

 

Saturday can’t come soon enough! Thank You All for your lovely good vibes – Cannot even explain how much I appreciate every ounce. 🙈❤

 

‪#‎thyca‬ ‪#‎whatthyroid‬ ‪#‎thyroidcancer‬ ‪#‎thyroidcancerawareness‬ ‪#‎radioactive‬‪#‎RAI‬

F*ck You, Calcium

I’m going to keep this short and sweet. Today. 11:30AM. Desert Radiology bound for what I thought was just an ultrasound. Just kidding. Tack on another biopsy. Dr. Mecca was out on vacation but for some reason my surgeon didn’t know that…
I didn’t catch today’s doctors name. He was young. He looked like a dear caught in some headlights when he came in; totally not expecting to be performing this lower sternum biopsy. He even admitted that. Stab. Stab. Stab. The numbing hurt like a mofo. After that it was eight different needles worth of uncomfortable pulsing. One literally felt like it hit the back of my throat. That did me in for a jolt. Two hours later – I’m late for my bloodwork appointment all the way across town. My nurse and I quickly faked a “STAT” signature on all my bloodwork forms, she put in a call to Quest, and away I went. I was 15 minutes late. Not bad. I waited another half hour. 10 tubes of blood and almost 18 hours fasting, I was on my way home. No energy to snag that chest x-ray I still need to complete all my pre-op confirmations.

I get home. Ate. Let the cat outside and then settled back in to finish my work up for the day. (Note, I am STILL working and it’s 7PM my local time.) I receive a phone call at 5PM from my regular physician who was concerned about my dangerously low calcium levels. Weird. I feel fine. And how did she get those results so fast?

She then proceeded to ask for my surgeon’s contact information and endocrinologist’s info so she could relay these findings to them on Monday. Until then, she insisted I pick up a prescription she called into the pharmacy for some sort of Calcium pills and urged if I ever felt numb, tingly, or had any muscle spasms to immediately go to the ER. Wow. Totally not what I was expecting. This was already a long enough day as it was. This better not jack up my surgery date.

On the brink of all this crazy, one really fun thing did find itself at my doorstep this evening. An adorable Fall-o-ween care package from Jim and Peggy Murray! Filled to the brim with the most fun things; from candies and cat toys, to hair product samples and so many more bright and colorful things – You two Wisconsinites sure know how to make a gal feel like a kid again! Oh! And speaking of kids. A childhood friend, whom I’ve known since the dawn of kindergarten will be crashing at Casa De La Murr tonight. So excited to have her and her beau stay for the evening!

Stay cozy everyone.

A Rainy Wednesday in the Desert

I woke up to the sounds of rain this morning. It’s fall in the desert; temperatures barely gracing the mid-sixties.
Julian and I just got back from a forty-eight hour adventure to Minneapolis for Halloween. It was such a lovely visit.
Pulling myself in every which way possible, I managed to roll out from under the cozy warm blankets and a snuggling cat. My last surgeon appointment was this morning where I signed my life away, once again, to the care of Dr. Nasri. I would have much rather stayed in bed.

Initial here. Initial there. Initials everywhere. I made it though the stack of papers. I read all the descriptions I was initialing the first time, but I decided to skim over most of these this morning due to all the gory details they list out of what could happen. No need to feed my anxiety monster anymore – he’s a bit plump already.

From there back to a room I went. My appointment was at 9:45AM and of course he finally entered around 11:15. Ridiculous. He informed us that he took a second look at the PET scan and spoke with Dr. Mecca who performed my biopsy. Nasri noticed a bit more of a glow in some nodes near my sternum as well. I have a measuring/mapping appointment with Dr. Mecca on Friday. He will perform another ultrasound on my neck to confirm the exact location of the lymph nodes that need to be removed. They upped my surgical procedure from a simple left neck dissection to a left modified radical neck dissection paired with a mediastinal dissection. He plans to clear out various lymph nodes in both areas in attempt to prevent the cancer from spreading into my lungs. He insists I am RAI resistant and that the chance of reoccurrence after this surgery is yet again possible.

Proceeding all this nerve wrecking info, this office has a special procedure they perform in preparation for surgery where they check your vocal cords. They numb your nose and shove a little tube with a light on the end down each nostril. Totally. Torture. As well, you are required to pay additional $ that is not covered by insurance for a nerve and vocal cord monitoring. Better safe than sorry, but all these little things just add to the total dramatic experience.

As always, a time has not yet been assigned for the day of surgery – I’ll know 24 in advance. Nasri said this particular procedure should take 2-3 hours instead of 5-6 like the first round. I’ll take that as pretty much the only win so far in this repeat horror story.

Tomorrow I head to my regular physicians office for a slew of blood work, EKG, and chest x-rays for pre-op purposes.
Friday the mapping ultrasound, and from there we are headed into the final countdown.

I’m feeling confident, but that comes and goes. I sometimes still can’t believe this is my life. That I am dealing with such a resilient disease. I’ve never once said “why me” because really, why not me? Why not anyone? It’s just frusterating. Life is such a gamble that no one is in control of.

Operation

November 19, 2015. T-Minus 29 days before I go under the knife for the second time.

I met with my surgeon last Friday afternoon before I cut off to California for a couple days (Much needed!). It was surreal to be back in that office again. The girls up at the front were much nicer this time around. Nasri didn’t seem quite as awful as he did in the past. He gives it to you straight, which is generally terrifying, but I tried to give it right back to him. I questioned if these newly diagnosed lymph nodes were something he missed or if it’s new cell growth. He claims it’s hard to say – He cleaned out about as many of those little bastards as he could in the first surgery and one year ago my blood levels displayed a clear pallet.

90% of thyroid cancer patients are cured with surgery and RAI. I am in that top 10% that didn’t get so lucky. In that 10%, he placed me in the 8% category of having a more aggressive form of PTC, which may or may not, have me jetting off to another state eventually for further testing. We won’t know anything about that until after surgery. The good news is they located these nodes which means the disease isn’t lost somewhere in my body. “That would be really bad.” Nasri states.

My nerves started to get the best of me when he was reading the biopsy report and measuring areas of my neck. The location of the nodes and his ruler were off. I pulled out my phone with the image of the biopsy marks to show him where exactly I was stabbed. He was grateful for the photo – but why am I providing crucial information for surgery mapping? He was surprised that my neck had no source of any tenderness. I swear I am immune to health issue symptoms or maybe I was just raised to be tough? I plan to request the ultrasound images and inquire about another imaging session before surgery to ensure he knows exactly where he is headed.

I will get graced with a new scar since these nodes are located further down the left side, towards my color bone. Ahh well, just a little extra character. This surgery gets a little more complicated due to the fact that we are now going to be digging around near two major arteries in the lower neck. I’m trying not to think about that. I asked if he felt confident in the surgery, to which he replied “Of course, I’m the best there for this job.” And so it goes; my life is once again in Nasri and his team’s hands.

Until then, I’m doing my best to go about things at a normal pace. KIDDING. That’s not at all in my nature. I’m currently balls to the walls in design projects, yard decorating, cat snuggling, doctor appointments, and gearing up for a quick trip to Minneapolis. A possible jaunt to CA or UT before surgery as well. And today, I’m taking a few hours to myself, spa bound, with a book and an eighty minute massage scheduled (Thanks, Claud-O!).

As the days roll closer to the 19th, this whole oh so cool, clam and in control of the situation attitude will fade some – But hell, for now, the world does not stop moving for anyone or anything – Why should I?

Déjà vu

Guilty. I love bacon.

Tuesday night as I laid in bed, unable to sleep at the thought of yesterday morning’s verdict, I predicted to Julian “Tomorrow, the doctor is going to say, ‘All your scans did come back clear, however through further testing with the ultrasound guided biopsy, it looks as though both suspicious lymph nodes did come back positive for cancer.'” I was spot on.

Iodine scan – Clear.
PET/CT – Clear outside of a small glow in my lower left neck.
Ultrasound Biopsy – Both enlarged nodes tested positive for PTC spread in my lower left neck

I inquired, if these were missed during my first surgery or gradually grew? Due to my blood work track record, I was clear after my RAI treatment for a solid year. However, at some point, a few nasty, microscopic cells threw a party and here we are again. My endo is also currently assuming that I am non-avid or resistant to the RAI, which will possibly require further testing after my next surgery at a research facility. I have an appointment scheduled with my surgeon tomorrow afternoon. Dr. Sina Nasri will be performing the procedure once again. They have a terrible website, so maybe we can trade services? I am also being proactive in the sense of scheduling an appointment with my oncologist on Monday to get a second opinion on what I should contemplate after this next surgery, considering my situation is getting a bit more complicated with the reoccurrence.

This has all been a blow to the positivity train I’ve been riding. I feel weird. I’m frustrated. I’m nervous. Why wouldn’t my endo notice my thyroglobulin levels rising way back in March? It’s even obvious to me after sifting through a years worth of blood work results that tumor marker levels were on the rise. I feel like I am starting all over – to an extent. It’s very hard to concentrate on my every day life. There is a new form of numbness to my emotions that I hate. I don’t want to lose my passion. I’m scared, yes. Will this forever keep popping up at the most random times? Totally possible. Thyroid cancer ain’t nothin’ to f*ck with.

Onward.