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!
*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.
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.
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. 😘💪🏻
– The girl in pink pineapple socks
I was administered a shot in my
*ass today for the very first time in something like, twenty-five years? Left cheek in case you were curious. Another rounds the corner for my bum tomorrow. Right side. Fair is fair. To follow, waves of exhaustion before I swallow a tiny little radioactive pill, from a futuristic looking vessel – Wednesday AM – For the second time in my life. Then I accept being avoided like the plague by all things living for a solid week as neccessary. Since I haven’t stopped running yet, why stop now? Frank is going to go ape *shit.
Life surely has been nothing short of thought-provoking, busy, and arresting since the last check-in to socialize about my lack of a thyroid. I never went into detail about this past surgery over Christmas, but maybe I’ll be so bored over the weekend I’ll write so you all can be bored with me, among all the bright pastel colors. Oh! And hey look. Another holiday ruined due to this unwanted malady.
The entire month of February turned out to be a travel whirlwind. Not by plan, but by total chance/luck/good people. I took all that lovely by the horns and flew! I am so grateful. But it turned me into a junky. I cannot wait for the next spontaneous jaunt – to ANYWHERE. Currently, as I see others traveling, I’ll admit – I’m jealous. Like, really jealous. I’m sorry. I can’t help it. Take beautiful picture for me to view from the digital side and sulk because I’m not there. P.S. I love you.
March 25th marks 2 years since my very first brush with surgery complimented by the removal of a vital organ + treatment. Christmas is 3 days short of 3 months ago, when my second surgery took its course. All that has forever changed my life. And so have the days of not appreciating a size four waste line. Whatever.
Two surgeries in two years and I am full of life. I have a ridiculously handsome/talented/hard-working/best friend of a husband, my very own personal satan (a furry mammal disguised as a cat named Frank), a beyond supportive family whom I can’t wait to hug the
shit out of in May, and the very best looking friends with personalities to match – In. The. Whole. World. What more could I ask for? More plants maybe…
This whole extravaganza in my What Thyroid existence has been quite the ride. Paired with other affairs that life likes to throw at us all – While we’re least expecting it. Or when we could really need/use a
*fucking get out of life free card. Nope! Never happens. So you decide. Sink or swim?
The loss of my father was a massive blow. Like literally paired, 50/50 with the day I got the call about me, myself, age 29, having cancer. What? I just recieved my death ticket. Then, a year later… Excuse me? Dad’s dead? What the
*fuck is going on. April 3 hits one year without someone who has been a huge part of my life since I remember, remembering. And I see my grandparents aging and my Mom suffering with herself and her own vices. Some very impressionable and dear extended family, dealing with loss and disease. I’m not sure how I avoid being a hot mess, puddle of tears, in a dark corner. Well, sometimes I am. But the corner is never dark. It’s light. I do that on purpose. It’s usually outside so the wind can carry that sad energy away from me for a while. But really, what is this life and what is the point? But then I bounce back. Strong. Excited. Vigilant. Observant. Ready to love and save everyone and everything just THAT much more. I seriously talk to my plants while I give them a little extra water that Nevada would like them not to have. I adore You All so much.
Back to the originality of this post – Wednesday is D-Day! I had nightmares last night about the shot I got today. It wasn’t that bad. I’m such a thirty-one-year-old wuss. I’m hoping to document this treatment better than the last time, though looking back, I watched a ton of movies, was sick and slept a lot. Julian and Frank went to a hotel where Frank caught a cockroach. Ish. We were living in an apartment then. My how things have changed.
This time, I’m secluding myself to our master bedroom and bath, since it’s all attached. I have a chair to sit in right outside the patio doors. We’re moving my iMac and desk into the bedroom to serve as a TV as well as inspiration to work – energy pending. I’ll show you the extent of our preparation tomorrow when it’s complete. It’s grossly organized and sterile. If insurance ever got cool, they would just let me vet this out in a hospital and save us the time and trouble. But alas, they’ve been and always will be cheap
*bastards and I’m thankful, at least this time around, for the stingy vaccinations that helped me avoid being off thyroid medications and turning into a complete zombie for roughly a month. Awful. Never again.
Oddly enough, I am excited for Wednesday because I get to see Leman again! He is the nuclear dude for Desert Radiology and is a pleasure. Cheers to all the safe and hard working humans that expose and help toxic ones like me, push for a better and healthier life. I plan to send him a card to ensure he knows how much he is appreciated when this is all said and done. For the second time.
Alright. I’m going to check out for now. Julian it “weeding” the front yard while the wind cracks a whip so I don’t have to. I have designs due and I would like to get outside to plant some greens I picked up yesterday with my 10 year-old friend Charlee; IF this wind ever decides to subside. More soon – Whether you like it or not.
xo! – La
P.S.S. If there’s anyone out there that ever has a question or concern or needs a little talkin’ to? Holla at me. I’m so open and extremely honest. Brutally. But I don’t think that’s a bad thing. Why sugar coat a serious situation. Hands down, never hesitate to ask, talk shit or even throw a little positive vibe this way. All is welcome!
I apologize to the uttermost sincerity for letting swear words roll off the tip of my fingers like they do my lips, very comparable to a sailor, but hell, I come from a family of them so please accept that I really am a lady in most regards and never mean to offend. Love you.