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. Not only does this blog exist to represent a plethora of thyroid cancer knowledge and awareness, it also touches on my experience to all my fellow survivors and recently diagnosed. My intentions are always to engage, inspire, make you laugh, create a blanket of comfort, and to let you know – You are going to be just fine.
This week, I am currently undergoing my yearly cancer screening. This involves thyrogen shots, blood work, a neck ultrasound, a tiny dose of RAI, and of course a full body scan this Friday. I will make sure to write about the whole process. I do have a few really great subjects to touch on next week pertaining to the cost of having a “good kind of cancer” as well as all the pills that have come into my life since being diagnosed.
Stay tuned, Darlings – Keep fighting the good fight!
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.
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!
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!
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.
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.
Next up! All the pills. Onward!
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!
1.a large ductless gland in the neck that secretes hormones regulating growth and development through the rate of metabolism.
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.
Those are just some relatable basics.
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!
*I can’t say I have ever believed in true karma. Too many shitty people get away with too many shitty things. And I’d like to think there is more outside this life, though we may all be just as important as a cockroach in reality.
I can confidently say I have had my go-around with life at only thirty-one years old. I have seen a lot. Done a lot. Been broke. Been stable. Let stress get the best of me. Indulged a little too much when I shouldn’t have. I’ve met some exordinary individuals and found myself under the shoes of others. I cannot say I have a terrible life. In the scheme of it all, it’s been pretty fantastic. But there are bumps and unfortunate times and that is to be expected. Including a cancer diagnosis, no matter to what degree.
My quarterly blood draw was Monday. It’s like my veins were on vacation. The phlebotomist and I couldn’t see a line so he went in blind; sticking only by feel. Luckily, for me, he’s clearly damn good at his job. The task was effortless. Still, it hurts and I continue to hate needles. I bruise quite fiercely. And after all the positive preaching I toss out there I do find it hard to stay calm for myself when I have no control of the outcome.
Yesterday, all my calendars, digital and written, reminded me of an appointment I had made three months ago with my oncologist, Karen Jacks. 1PM. Those afternoon appointment always interrupt my creative flow. I should know that by now. 12:50PM. Onward to Summerlin. The wait is never long and as I was called back, dreading what the scale would taunt, I was told my appointment was yesterday. I had missed it.
I proceeded to inquire with Dr. Jack’s scheduling assistant and she assured me they were correct. How sad is it that? You get so busy doing everything for everyone that you forget to take care of yourself. I apologized for my forceful, yet inquisitive manor, because surely, I would not have forgotten this appointment. For goodness sakes, Dr. Jack’s is THE only one looking after me since I was cleared by my surgeon. My endocrinologist never even followed up after my last treatment of RAI that she administered. Professional, right?
As I was getting up to leave, Jenn with two n’s, (Dr. Jack’s Nurse) walked up. I, like, love this woman. I gave her a hug. She too, last year, underwent a total thyroidectomy due to thyroid cancer. Not quite as invasive and she has had no reoccurrence, (High Five, Nasri!) There’s something about having such an intricate situation in common with another.
A bond, if you will.
I asked her if, by chance, if she could give me the results of my blood work and she did not hesitate to say yes. We can’t be much different in age. “Everyone has access to their results if you request it.” she commented. Well then. Toss them over, pretty please! The scheduling assistant, already not super fond of me, went ahead and printed them out. Why didn’t she offer that before I went into semi-jerk mode? We could have totally avoided an awkward situation. The sheets crossed the desk and I stared at the numbers.
TSH 0.017 (Critical Value, Verified x2, FLAG: Critical Low)
Thyroglobulin 0.2 (Low)
My mind went blank. Is this good? I should be a master of all this by now. But the same rule applies as to why I haven’t learned to code websites; I design them. I rather be really good at one particular thing, than half as good at two things. I’d rather spend all my energy and mind on staying positive and strong, rather than learning basic numeric levels that pretty much rule my life. Plus when your head is everywhere than where it should be, it’s hard to concentrate. You don’t read a book while your driving.
Jenn with two n’s assured me, these were fantastic numbers and to schedule another set of blood work around my one year anniversary for the second surgery I underwent – December 24, 2015. Time. Flies. Roughly four and half months away now.
As I walked out of the icebox building, into the blazing heat, I wasn’t sure if I wanted cry or run. I was so relieved, yet I have this pessimistic nature inside me saying, ‘don’t get your hopes up.’ I’ve been in this position before.
For now, and for the next few months, all is well. I feel fine. I can breathe just a bit more. I can attempt to relax. I will start all those personal projects and books that I have been putting off, tomorrow. Ha. Julian and I will take our anniversary trip to Palm Springs, like we always do and I will head to Lake Tahoe in two weeks. I will continue to share my experience and thoughts around it to anyone interested. To anyone who asks or need help.
Today, having no relievence to the above, I went to buy film at Wal-Mart because honestly, I have no idea where else to get it and I’m teaching myself to shoot with a 1968 German Leica in hand. No, that’s not a gun. F*ck guns.
In front of me, in line, stood a very fragile girl. Of some Eastern Indian decent. She had to have been my age, maybe a touch younger. She wore no make up and she was beautiful. I worried for her pettiness, as each one of her legs had to have been barely bigger than one of my arms. She dressed cute and natural and I couldn’t help but wonder if she had problems finding clothes her size, like us curvy women do at times.
She was buying two hand soaps, some q-tips, oranges, and a cheese cake. Her total came to twenty-four dollars and ninty-two cents. She tried her card and it was declined, twice. You could tell in her demeanor she knew it would be, yet she tried anyways. Then she pulled all the money she could find, out of her hazy green pockets. A five, a single dollar and some change. The line was building and she was getting uneasy trying to count. She nervously asked if I would help her count how much money she had as she was still learning U.S. currency. And so I did. She had eight dollars and eighty cents. She gave back the cheesecake, one soap and the q-tips. As she walked away I had this ridiculous feeling. I’ve been in her shoes before. Maybe not to this extent, but I thought of yesterday and I thought of how uneasy I have been since I got back from Wisconsin. I couldn’t help but pay it forward. I did hesitate, but as she walked away, I asked the annoyed clerk to quick ring up her things. She put them in a bag and I ran after her, leaving my purse, my life, at the mercy of the cashier and everyone behind me. I caught up to her, tapped her shoulder. She slightly jumped. I handed her the bag and smiled. She thanked me many times.
As I got back to the registered the cashier and the few people behind me fawned over what I did. “That’s going to come back to you someday you know! That was so nice!” All I could say was, “I shouldn’t have bought the cheesecake.” (It was $12.95 at WAL-MART!) But who am I to know if it wasn’t for her Grandmother or a special occasion.
I do not do things, so other things can come back to me. *Reference first paragraph of this post. I don’t always help people when it’s obvious. I am a firm believer that is why rich people are rich. They are either super smart, clever bastards or they simply keep what is theirs, to themselves and their family. No amount of money could fix everything, everywhere, for everyone anyways. Wealth is what you make of it. It’s a mindset. In this situation, something crawled up into my stomach, danced with my gut instincts and knew I would regret not helping her. And so, que reaction, though there is a 50/50 chance she would walk outside, remember she had just forgotten to transfer money from one account to another, hop into her mercedes, and drive off. I wasn’t about to play investigator to ensure she was legit. If I was wrong to help, it would ruin my dreams of humanity truly being more lost than it already is.
Cheers to some things just working out sometimes.
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.
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.
Post From Saturday
An early post – Because I’m busting on out of here! Champagne in hand thanks to @jmurrphoto 🍾🍾🍾
Enough about him and his cute butt.
The Easter bunny @diyordone or done visited this morning. I also received a #gorgeous arrangement of #florals from a dear friend via #Minneapolis, AND a sweet little package that carried an #amethyst #crystal and #incense from #California graced me as well! AHHHH. La Dawna! You’re amazing. See you soon 😘
I finished Parks and Rec. I’m sad. And didn’t totally fall in love with Season Seven. But I still miss them already – My #Pawnnee friends!
The remainder of my day will be spent reading outside. Tomorrow, nothing special. Working more than likely. I’m anxious and wishing I was with our families back in the #Midwest, but soon enough!
Love you all – You make me smile!
xxoo – Laaaaa