On Pins and Needles, with an Extra Side of Needles …

Why do I feel like every time I post, I need to start it off with “WOW – It’s been a while.” Sorry about that. Life gets busy and wild and I’m the worst at carving out time for myself these days. Unless it involves travel. Traveling has been a huge outlet for me, helping to reduce stress and explore, because let’s face it, life’s short! Anyways, hello there, welcome back! To you, to me. Let’s talk life without a thyroid once again.

——–

If there’s one thing I’ve come accustom to, it’s you take what you can get. Whether it’s an ultrasound on a Saturday or surgery on Christmas Eve. Avoid excuses, face reality, and move along as quickly and calmly as possible. You’ll never be ready for bad news so here’s vibing for the best – always. *

——–Starting last Saturday, this week marks the start of my yearly examinations since diagnosed with thyroid cancer in 2014. Considering my initial diagnosis, I have yet to be in remission. Every three months I have labs pulled. Every six months I check in with the docs for them to tell me pretty much nothing except we’ll keep monitering you. Thanks. And every year I have a plethora of testing, more blood work, and scans done.

Now, while I’m about pro level at this microscopic game of thyroid cancer, I still get quite uneasy when I have looming appointments like these approaching. Especially the yearly follow up. These are big time, folks. And I have yet to receive good news, just once. Let me tell you, I f*cking NEED THIS. A break. To regroup and refocus.

April 22 ( Earth Day! ), the last thing I would ever ask for is to unfold out of slumber and head to Desert Radiology for a neck ultrasound. Playing with plants and spending the day outside, enjoying our blue planet sounded more like my cup of tea. But alas, like I mentioned in the *above, sometimes you just have to dive in and be done with it.
Away I went.

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Random Side Thought: When fellow patrons in the waiting room hear you called down the ultrasound hallway, I wonder the percentage of people listening assume I must be pregnant. AND, if and when that day ever comes, will I be traumatized by ultrasounds? I mean, seriously. I’ve had about a dozen of them and none came out the way we wanted. 

Back the the update.

—–

At this point I know exactly what cancer looks like under ultrasonic frequency. Your lymph nodes appear circular and solid black, traced with a small outline. When cancer shows it’s ugly presence, the best way to describe – Tiny little static within that solid black circle. When mapping for my second surgery, one of the ultra sound techs and the administering doctor, stabbing needles into my neck, showed me the art of death. Now I’m terrified of it. So rather than stare at the screen this time, I opted to shut my eyes and keep breathing. I didn’t as questions like I normally do. I’ve pretty much asked them all. Knowing I had all this other crazy coming up the following week, I decided I’d rather know nothing and hope for the best.

—–

“I said to my soul, be still and wait without hope, for hope would be hope for the wrong thing.” ― T.S. Eliot

 

—–

OK. I lied. I did peek just once. She was snapping so many images! But I only saw the screen for maybe twenty seconds and to my relief, everything looked normal.

Sunday was all mine. Julian went galavanting with some high school friends, in from Houston and Minnesota. I decided to stay home alone with Frank and just vedge. The only downside was the damn wind we’ve been getting knocked around with here in Las Vegas lately. Any day now it can stop. My allergies are killing me on top of everything else.

Monday kicked off this week with Thyrogen Shot 1 –  It stung like a motherf*cker! Tuesday, exactly 24 hours later, ( in my best DJ Khaled voice ) ANOTHA ONE. I’m still wrapping my head around why exactly I paid 2K to get probed with needles. Oh wait, that’s right. Because the alternative is to go off your thyroid meds for three weeks and feel like a pile of brain dead mush that sleeps all the time. That doesn’t fly in the creative entrepreneur club.

Directly after my first injection Monday, I headed downstairs to get my blood drawn for a pregnancy test. No, I am not pregnant, nor are we interested at this point. It was strictly precautionary due to the fact that later today, I’ll be swallowing more radio active iodine in preparation for my i-131 full body scan Friday.

BUT GET THIS. Summerlin Hospital LabCorp lost my blood! And so this morning, when I was suppose to pop that radioactive pill, I got a phone call from Desert Radiology’s Nuclear department. My heart dropped thinking they were about to tell me we had a Lil’ Murr on the way, but low and behold, they called to inform me they could not find my results. Le sigh. Is this really happening? So at 7:30AM today, I raced to another LabCorp to give additional blood for a STAT pregnancy test. Go figure, the first lady poked me TWICE and didn’t get a vein. F*ck. I hate needles already and she was just digging into my arm! After her double fail, a second mam came in to draw. She apologized, she was going to have to go in the same vein that was already bruised from Monday’s lost labs.  She got it like a pro, but I was about five seconds from passing out. She yelled for ice and laid me down on the table directly ahead of where I was sitting. What an early morning trip! I promise you I will NOT be paying for this second bill if and when it comes. The worst part of it all? I have to get more labs tomorrow to check my thyroid levels. AHHHHH. I’m going to keep telling myself, the Universe is throwing this all at me to test my ability to stay positive and calm, with results tossing me into my first NED ( no evidence of disease ) category in three years. Pretty, PRETTY, please.

And now I’m writing this while I sit patiently, trying to concentrate on work, and await Keith to call me over to swallow some foreign pill. See, the thing is with these tests, they have to be done in a specific order. Mostly due to the Thyrogen injections. It’s a stressful and daunting runaround. All results should be available by May 3. My appointment with my endo is May 8. I can pick everything up before then, but do I want to? I don’t like my endo enough to wait for her to tell me the verdict. What would you do?

Alright. Time to sign off. Thanks for reading! More from me Friday. We’re halfway there!

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Poppin’ Bottles!

I’m going to keep this short and sweet.

 

After the insane year I have had, I am cheers-ing to the Universe.
Glass of champagne in hand …

 

The call came in today. My scan report read : No Evidence of Disease.

 

*Mic Drop*

 

 

 

1,2,3 – RAI PREP!

This post was originally going to be available as a first update in isolation, but between extreme exhaustion and anxiety, I have very little brain activity.

My first dance with a quarantine like this was 10 solid days, one year ago. But let’s revisit this particular morning of my 2nd scheduled quarantine and then look at what I did to prepare. I hope this can help some honeys out there. That has always been one thing that lacks in my entirety of a cancer experience. Knowledge, documentary on what to expect, how to prepare, what precautions to take, what procedures are more exhausting than others. All the processes, experiences, and success of it all.

March 23, the Day Of
I reported to Desert Radiology early in the AM to willingly swallow a radio active pill containing 150 millicuries  in hopes of remission, finally. It’s administered by Leman. This tiny pill is removed from this massive metal box. Inside the box is a metal cylinder that contains the pill. I remove the lid, take the pill in my hand and down it with a bottle of water. From here they gear you up with plastic gloves, more water, and a letter to inform the police, if I were to get pulled over, that I am radio active. So radioactive in fact, that I have the ability to trip police scanners off – no joke!  I take the pill, grab my things, and I’m  immediately escorted out the back door for an exit. I can’t even walk through the lobby because I could harm every and anyone. WILD. And away I drove, purple plastic gloves on hands, heading straight into quarantine and seclusion. BYE.

SIDE NOTE: RAI Doses (Radio Active Iodine) 
The first time under treatment I swallowed 175 militaries and had to be quarantined at home for 10 days –  It didn’t work. The cancer came back. Here we go again, then. Another 150 mCi. Mind you, anything over 600 millicuries in a lifetime can leave you with a high, potential risk of  leukemia or breast cancer. I’m half way there! Due to that exact fact, this will be the last time they attempt  RAI “therapy” to treat the extended cancer that waltzed its way into my lymph nodes. Only four days. Here’s hoping!

———–

March 22, the day before I was bound to a single living space for four days.

I have a tendency to take things to extreme levels in organization, cleaning, and preparation for certain situations. Getting ready for another round of RAI (radio active iodine), my motto remains:  Better safe than sorry. On top of that, since my insurance didn’t deem it necessary for me to safely reside in a hospital for these days of confinement, I created a list of execution in creating a sterile yet comfortable space for my quarantine.

 

First things first. Julian went to Home Depot, retrieved a roll of painter’s plastic and some cheap painters tape. With that single roll, I was able to cover every inch of my bedroom and bathroom floors, my entire king size bed mattress, and our white leather couch. I used an old pair of super soft sheets that have had their day, plus I didn’t really love the light blue color anymore. They were a bit small for our new bed so I had to tape them down. From Walmart, we swooped up two cheap-o pillows, six towels, plastic cutlery, paper plates, heavy duty trash bags, a new light weight blanket, toilet paper, paper towel, dispoable plastic gloves, three tooth brushes, a travel size tooth paste, four bath poofs, and some travel size shampoo, conditioner, and soap. Absolutely everything that is disposable. All in all, with food, I think we spent just about $200 – Which is clearly much cheaper than any hospital stay and I ate fresh, organic foods. #Win

 

 

 

Once all the plastic was down and ready to go, my room cleared a “Dexter Approved” status given by Frank Murray, my plastic laying advisor. Julian had two coolers right outside my patio door in which he changed the ice every day and stocked with H2o. I ate a lot of chicken and avocados. I drank a ton of water and Glacier Freeze Gatorade. We brought in our kitchen table, it’s much smaller than our office desks.  I refuse to have a t.v. in our bedroom and was hoping to get some work in, so my iMac fit perfectly and served as entertainment/taunting stress, knowing how much I have on my current design plate. I had my coffee pot and toaster oven in the bathroom which served as a quaint little kitchen. I had two outfits picked for each day, the first two of which I threw away along with all the towels after the first day.

 

 

 

I really took the time to make my space comfortable. Sanctuary like. Lemonheads in a champagne coop? Yes, please! I brought in candles and incense, plants, and photographs. It was a much better stay than my first round last year. I feel very fortunate that we have such a beautiful home and backyard. Though I opted to not go outside for the first three days, the pool view kept things inspiring and exciting for summer.

 

 

These four days of isolation were documented each evening and can be read in previous posts. Nothing exciting, I promise.  Saturday afternoon, I cleaned the room, throwing 80% of everything away, including pillows, sheets, towels, all my travel size toiletries, and even my hair brush. All will be stored, double bagged, in our garage for the next 40 days before trashing. Yeah. Solidly radioactive. I washed the two larger blankets and any other parcel of clothing I decided to keep, three times to be extra careful. All were separated from our regular laundry.  I had to change my clothes TWICE a day and place them in plastic bags until I could leave my confined space. Any small drop of sweat, urine, spit, snot, etc. could contaminate and harm any warm blooded species that may come in contact with me. I could not work out or do anything strenuous to prevent sweating and I had to wash my hands every hour while I was awake. At this time in my life I am back to freelancing full-time so there is no sick pay or FMLA. I have worked tiredly through both my cancer quarantines. All is well in the world, but damn it’s hard and a lot of work.

 

Yesterday was Easter. I talked to all my family in Wisconsin, wishing I was with them. Or with the Murray clan in Mexico! Tomorrow I have a blood work appointment at 2PM and Wednesday morning I report for my I-131 scan at Desert Radiology with Keith – Looking forward to clear scan results! I have to carry a piece of paper until May 7th saying that I may still have some radioactivity roaming around inside my bod, which has been known to set off police radars and airline security. Ha! WILD. Other than that, there once again, are not enough hours in a day and I am preparing for a busy, busy work week among other things. I NEED ANOTHER VACATION.

 

Cheers, Lovers. Take care of You.

 

 

 

 

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

DAY ONE

I had zero brain energy to write about my insane preparation for this isolation process that I did yesterday, so outside of a shower, I’ve been watching Parks and Rec All. Damn. Day.

 

I reported to Leman at 7AM – Gave a shout out to Keith on the phone and told him I’d see him next week for my I-131 scan. Had both those techs rolling. Received the loveliest of compliments – A wish for more patients like me, in attitude, preparation, and knowledge about my situation. ‪#‎zing‬!

 

‪#‎Lemonheads‬ and ‪#‎h2o‬ have been my best friends, along with coloring on and off. ‪#‎FrankMurray‬ has either been pounding on my door to get in or sitting outside the patio window staring/meowing at me throughout the day.

 

AHHHH. I just want to sleep for 12 hours.

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.

“LUCY! You have some explainin’ to do!”

Biopsy yesterday morning has left me looking like Dracula swooped in for a quick little snack. Pretty sore. Nothing found on the right side. Two suspicious nodes on the left which they stabbed the sh*t out of and that was that. Results  – October 14th. I am happy to say I will have Claud the Broad and Todd in town for the big reveal. I plan to have my Mum-in-Law come to the appointment with me so we can drill this doctor for every piece of information she is worth.

Here We Go Again

Life is so … interesting. Most of the time it makes no sense. Why are we here? What is the point? Are we just some maddening experiment, or just a bunch of cells that got tossed together and now here we are as these complex beings, with emotions that run wild and on top of it all; bodies that are vulnerable to so many different things. Yet at the same time, these brains of ours, so complicated and formative. So intriguing and personality based, with such character and grace. Is it all by accident or is there really some greater beings out there controlling and watching and guiding us all through life’s crazy circumstances, most that don’t even make sense.

I’ve recently been going through some major soul searching. Searching for absolutely anything to make a sense out of certain situations. In this case, my battle with thyroid cancer. Just hearing the word cancer is a body deafening sound. No matter the severity of it – it’s something I wish upon no one. And even though, the word was first brought into my life over a year ago, and I’ve been well aware it’s something that I could battle forever, it never seizes to be so emotionally impactful.

If you’ve read this far into my story, things have been going rather smoothly. Updates from my doctors and everything in between have been on the up and up until the other day.

I had my first yearly iodine scan. Four months late, mind you, because my endocrinologist insisted I receive Thyrogen shots but neglected to tell me my insurance has never covered them in the first place. I was on and off the phone with so many people, trying to figure out how to get these shots so I could stay on my thyroid medications. In the last year since my surgery and RAI treatment I’ve been feeling great. I didn’t want to fuck all that up now, but in the end, it still happened and it set everything back, complimented by some bad news. As I was off my thyroid meds for four weeks, and though my Iodine scans came back clear, which I thought was a positive prognosis, come to find out, my blood work proves otherwise, with off the chart thyroglobulin levels at 72 when they should be lower than 1, signaling possible residing cancer cells left in my body.

Numerous testing has started again to pin point where these cells might be. I endured a PET/CT scan today. My best friend Andi came with me at 6AM this morning, just to be sent home because they planned to inject me with MORE radioactive regiments which are not suggested to be around pregnant women. That totally sucked; to lose my favorite cheerleader and all her amazing positivity by my side. Not to mention, how much radio active shit that has been flushed through my body in the last year, am I going to ever have issues with fertility if I decide to have children someday? All theseTHINGS! It’s so overwhelming.

My main man Keith, who administered my iodine scan just a week ago was on my PET/CT scan case today which was cool. I really like him. Unfortunately he was the one having the rough time nailing a vein for the catheter, so another girl came in and snagged it away. My arms look like I am a recovering heroin addict at this point though. Rough.

From these tests – Worst case scenario: Thyroid cancer cells have metastasized to my spine, other lymph nodes, or my lungs. Best case scenario: There is some residual thyroid cells, cancerous or not, left in my neck bed and they will be removed with another round of surgery. The RAI treatment I went through last May didn’t seem to work, so my body may be rejecting it. Lame. It’s already been a hell of a year, I’m really in need of some good news.

Next up: Neck Ultrasound with possible biopsies of anything funky looking. This will take place Thursday morning at 10AM.
I have an appointment scheduled with my endocrinologist October 14th to declare the results of all testing and what’s next. I also decided to be proactive and contact an oncologist I was seeing in the beginning of my initial diagnosis, almost two years ago, just in case something unexpected claims dues on my health.

So now, it’s hurry up and wait. Story of my life.
Here are a few pictures from today as I got poked, waited and felt defeated at the fact that I am in this position again so soon.