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.
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.
I’m a little late. A whole month to be exact. And what a month to be late for! September is Thyroid Cancer Awareness month. I’ve been doing my very best to spread as much information, support, and mindfulness pertaining to all that effects current fighters, like myself, cancer free survivors, and everyone that helps support us all as we endure this quite terrifying and unpredictable experience.
I started the campaign below last year after my first surgery and RAI treatment. As a designer, I wanted to create something eye catching yet blunt to get people interested and get them aware in another way outside a butterfly, that Thyroid Cancer is a major life changing event and is on the rise. My goal is to continue to move this WhatThyroid? campaign forward with a website and some collateral in the up-coming year to help support individuals in financial need, that get diagnosed with Thyroid Cancer.
It’s been very impressive to find how many people, including myself before diagnosis, that do not embrace the slightest bit of knowledge about what a thyroid is or what it does for our bodies. Though in most cases, Thyroid Cancer is treatable, there are many ups and downs, mentally and physically that go along with this scandalous disease. More people need to start taking an annual neck check seriously. I recall back to how naive I was the first time they even discovered a nodule in my neck. I waited FIVE years to even do anything about it because I was scared. It set me up for a more severe circumstance later in my life.
When officially diagnosed with Thyroid Cancer at the top of 2014 – Completing numerous biopsies, x-rays, scans, a totally thyroidectomy, a double dose of RAI, and uncountable blood work session since, at the young age of 30, complications have now arose. I felt the need to take a minute and start the month of October with a huge shout out to everyone that has or is fighting this same battle – You are not alone! I urge anyone and everyone to please not take something that you might think of as a simple organ or check up, for granted. CHECK YOUR NECK!
More from me on my developments soon. Positive vibes are greatly needed. xo
Julian took this photo when I finally made it to my room. He was shocked at the size of the incision and wanted to show me.
Prior to surgery, when Nasri came in with his assistant and had colored my neck up with their black pen maps, I been told they intended to do a left lateral incision, up side side of my neck and then a smaller center incision across my throat. This would leave me with a nice, large hockey stick style scar.
Well, it looked as if they had changed their mind. At some point before the slicing and dicing started, Nasri’s black line art ended in a glue and tape project, leaving behind this little beauty scratch.
First. A second ultrasound, that DeBold performed himself. He was emotionless. I consider myself to read people rather well, but he was impossible. He barely said a word but at the end of those excruciating 15 minutes, he requested thyroid scan. Not to be confused with a CT scan. Yet.
This required me to make the proper arrangements up front, on my way out. A couple days later I was reporting back to the hospital’s radiology department. There I consumed a pill. I remember it being a 24 hour thing, which seems strange now. I took this pill and was sent home. I swear he mentioned something about mercury, however I must have mistaken that with iodine. The very next day, I was sitting in a chair, straight up, with a large, white plastic doughnut looking machine circling around just my neck. Lights were flashing in circular motions all around my neck. And then, that was that. They told me to drink a lot of water for the next few days and someone would be contacting me soon.
I was a hot mess. Nothing drastic happened. Nothing hurt. Julian was there. One of my best friends Ashely was there. I remember walking out from the procedure room, into the waiting area and the minute I saw Ashely, I burst into tears. She hugged me, Julian was on stand by. They didn’t know what was happening. I didn’t know what was happening. I was just terrified that I was in a situation like this. A situation where a doctor thought there was reason to need such a scan. I’ve never broken a bone in my life, let alone need a scan of something. Shin splinst. Shin splints is the worst thing that had ever happened to me and that was back in my high school volleyball days.
I don’t remember him really talking about what they found through those results, but I thought it wasn’t that promising when next I was being dragged in for my first biopsy. That was preformed by Debold at his office. I was so scared. I have this thing with needles to begin with, and now I was about to be stabbed in the neck for the next half hour. AHHHH. He wouldn’t give me anything to calm my nerves. He kept telling me if I wouldn’t settle down he wouldn’t be able to do his job. Dude. I am alone, in a newer relationship, no family, no nothing, and I hate needles AND you make everything seem like I am dying. How can I calm down. I remember Julian standing next to me, squeezing my hand for 20 minutes worth of tears. They streamed down the sides of my face as I tried not to shake. I think that sealed my fate and ended up causing me to recluse at such a bad time. I made it through the procedure and waited for the results to come back. Inconclusive. What does that mean? Well it means, Debold didn’t get enough cells through all the stabbing to tell whether or not the nodule was cancerous. He wanted me to come back in and do another biopsy, this time including the small cyst but I refused. He then suggested scheduling me for a CT scan, but when I found out the price, I decided to get a second opinion. I did not ever want to see that doctor again and I made sure of it.
Speeding things up, back to four years ago, roughly. I was living in Minneapolis off Loring Park in a stunning little apartment that happened to be an old 1920’s renovated hotel building. I loved that place. It was winter time, nearing that supposed “one month until Spring” phase. Julian (aka now husbandcake) was around and I remember I was struggling with a horrible sore throat for almost three weeks. I thought I was sick, and treated myself as such. Growing up, you didn’t go to the doctor for the flu or for colds, you muscled through that shit and rested, drank lots of fluids, and you were fine. That’s what I was doing. It got to a point though, where it was pretty much unbearable, and Julian took me to an urgent care.
The wait at urgent care was forever long. I went through all the check-in paperwork, which I had never had to fill out anything like it, yet in my life. Now, I know it comes standard everywhere you are a new patient. Duh. Ok. Got that done, just to hurry up and wait some more. Finally they took me back! I don’t remember how long I was there, at Park Nicollet.
Typical vitals were taken first. I had a minor ear infection. My throat looked red, but my tonsils were fine. They had me swallow some nasty, thick, lidocaine gel to see, if when it reached down into my throat, if the pain would go away. It did not. Strep was ruled out as well. Then came blood work (I fucking hate needles), a chest x-ray, a shot in my bum, that HURT LIKE HELL, and lastly an ultrasound where I met my thyroid for the first time.
Looking back at it now, they did a bang up job. Very thorough. I’ve never witnessed a place, since then, go through so many tests in the matter of hours at one location. Most scenarios, they initially check you out, get you comfortable as best they can, then send you along to follow up with scheduled appointments, complimented by days worth of nail biting referrals. I don’t really know why, that day, everything went one by one like it did. I should have taken that as a sign. But no. I was 23 and still taking life for granted. I walked out that day, headed to Walgreens, with a prescription to cure Thyroiditis.