January is Thyroid Awareness Month.
Check Your Neck.
Written by Jessie L O’Donnell, Jessie Lee Photography
One year ago, I imagined waking up like Snow White surrounded by the smiles of friendly forest creatures, birds, butterflies and flowers with a partially functioning thyroid. Instead I woke up to the words ‘you have cancer’. Those words woke up the rest of my entire life.
After going into what I thought would be the removal of my right thyroid lobe, I woke up after a 9.5 hour surgery to be informed that both thyroid lobes were covered with cancer and had to be removed. Because of the sizing and location of the cancerous tumors, I was on a fine line of not being eligible for Radio Active Iodine (R.A.I.) treatment. By the grace of God, the tumors that extended off my thyroid did not metastasize beyond the thyroid lobes from what my surgeon could see. If they had, I would not have been a candidate for the R.A.I. treatment. The body has to heal after the removal of a vital part of itself and I needed a four month period between my surgery and R.A.I.. This past year has been quite the rollercoaster that has no stop button but boy did it have a repeat button for emotions that I had no control over.
For those of you who have had thyroid surgery and/or RAI treatment, I don’t need to explain to you what the recovery and preparation entails. For those of you who don’t know what the thyroid functions are or want to know how radioactive medicine works, let me paint a visual for you. I am not going to sugar coat any of my experience because people tried to sugar coat it for me which was honestly just flat out insulting and made me feel as though my situation had little to no importance.
The thyroid influences every cell, tissue and organ in the body. It controls your metabolism, growth, body temperature, muscle strength, appetite, brain, kidneys, health of the heart, and reproductive system to name a few. I like to consider it the engine of the body.
If your thyroid doesn’t work properly, neither do you.
I am now dependant on a pill to survive. My poor pituitary gland didn’t know that my thyroid left their relationship suddenly. What an awful breakup. After surgery, my body and pituitary gland needed time to figure out how and where my brand new synthetic hormones were coming from and how to send them to where they were needed. This isn’t something that takes a week. It takes months. Many months that drag on so slowly and doctors can’t prescribe a different drug until that time has elapsed. During this waiting period, I had mood swings so off both ends of the chart that they scared me! I would cry uncontrollably over nothing. Or my shirt and pants would tear and rip as I turned into the incredible hulk over the smallest things. One ‘episode’ I recall vividly was the morning that my boyfriend decided to do a nice gesture and cook my favorite breakfast of over-easy eggs on wheat waffles. When I cut into my eggs and there was no runny yoke, my blood began to boil. If I could have stood up and flipped the table over with hulk like strength I would have. I wanted to stomp down the street like Godzilla and scream about my over cooked eggs. That ‘episode’ was just a tid bit of the emotional extremes during my recovery. And God Bless my patient and loving boyfriend.
Once I started to finally be able to get my emotions under control, I then had to prepare my body for R.A.I. treatment which is a six week process. The idea is to starve the body of iodine since the only cell within the body that absorbs it are thyroid cells. Yes, mine was gone but not all thyroid tissue cells were. Once the body is starved of iodine, the radioactive iodine medicine is ingested and any leftover thyroid cells suck it in essentially burning off leaving no trace of a thyroid. So if the cancer tried to come back there would be no thyroid tissue for it to metastasize onto. I could choose that option or I could choose to stop taking my prescription for 6 weeks which I was told is a difficult and horrible process. It sounded like I was going to turn into an angry and depressed sasquatch so the iodine free diet it was!
The diet was much harder than I thought. No dairy, no soy, nothing from the ocean and no salt. Say goodbye to anything that is on the grocery store shelf. No problem…I’ll just eat dairy free. Ha! Most of those items contain carrageenan which is derived from seaweed. Everything I ate had to be made by my hands in my kitchen. One great thing from this difficult diet was realizing all the stuff that is put into our food. Since then, I read every single ingredient in a food product and most of the time I put it back on the shelf after reading.
My experience with RAI treatment was different than yours and everyone else. Every patient’s experience is totally different from the other. It is a practice by the doctor administering it. Every doctor gives different amounts of the radioactive medicine for each candidate depending on their situation. I was on a fine line of being a R.A.I. candidate and because of that fine line it was decided that a much higher dosage would be ingested than the usual amount of what my doctor would give. All I could imagine is something that looked like the fluid inside a glow stick seeping into my system. Did I have a choice? Sure, like any patient with any disease. I could refuse the treatment and hope that my left over thyroid cells didn’t have cancer cells on them and go on with life for them to find their way to my lymph nodes and lungs. I wanted to kick those cancer cells’ butts! I was going to do whatever my doctor thought was the best for me because I trusted him with my life and so did my family.
After two days of getting shots to pump my body full of TSH, I was ready for R.A.I.. I was put into a special room with doctors who wheeled my nuclear medicine dosage in on a dolly that was incased within a giant lead container. As I sat there in my everyday clothes, they wore gloves, special rings and other attire protecting them from the medicine I was about to swallow. It was put in front of me with a tube-like straw that pierced into the container and I was told to drink as they stood across the room and watched. Everyone then left except for two gentlemen that held a Geiger counter to show how radioactive I was at different distances. They told me to move quickly as I walked down the halls to the elevators which they stopped so we were the only ones onboard. A different route was taken to the entrance area of the hospital to where valet had my car ready and waiting. I was handed a card to carry with me for the next three months so when I went off at airport security, they would know I had undergone a nuclear medicine treatment and not lock me up for trying to carry bomb materials on board.
The days after were surprisingly not horrible. My stomach was a little queasy at first as expected. Within 24 hours, I started to feel the heat in my neck where my thyroid once was. This was a normal reaction to the treatment and a good one. I was literally feeling the left over thyroid cells burning away. I unfortunately had to be isolated during this period and follow myself with Lysol wipes everywhere I went in my parent’s home. I stayed in my room for the most part not wanting to leave anymore radioactive residue than I had to in other areas of the house. It was lonely and I had way too much time to feel sorry for myself. I was finally approved to head back to Florida after a body scan I needed to verify that the treatment was a success and it was!
It was not even a week after my return to Florida that I began to have awful symptoms of the aftermath of R.A.I.. I knew that there was no way my body could ingest such a large amount and not show any side effects. The medicine travels through the intestines and that is how 90% of it leaves the body. The medicine ripped through mine causing major intestinal and colon problems. I had to seek a specialist in Florida to help with the pain. If that wasn’t embarrassing and horrifying enough, the return home felt as if what I was going through wasn’t worth anyone’s time.
The frustration is immeasurable. It seems as though I am in my own category which society doesn’t really recognize since they are not made aware. I’m not diabetic. I’m not going through cancer treatments that a person can visually see. I have been told by some of the best thyroid doctors within the thyroid associates at the #1 hospital in the United States that because the amount of deaths from thyroid cancer do not measure up to all the other cancers, the National Cancer Society does not spend the money on the research for a cure. There are 62,980 new thyroid cancer patients in the US a year with 1,890 deaths from it. That does not include the estimated 20 million Americans that have a form of thyroid disease and sixty percent of them are unaware of their condition. Many studies for RAI treatment actually come from France and the UK. Well isn’t that merveilleux. While we wait for the United States to begin recognizing that this is affecting much of society, I’ll be here eating croissants, sipping tea and taking naps.
These are some of the things said to me over the past year:
“You obviously don’t need a thyroid because you are standing here now.”
“All you need to do is take a pill, so what is your problem?”
“You don’t know what tired is. I have kids.”
“But you aren’t fat so how do you have a problem with your thyroid?”
“At least you got the best kind of cancer.”
The best kind of cancer? Wrong. I didn’t realize that the words best and cancer even should be put in the same sentence never mind my neck. I recently had someone refer to me as a bad-ass cancer survivor. I was quiet for a moment and about to excuse her statement but then said, “I AM a cancer survivor!” I had never said it out loud and it felt good! I watched my friend challenge Hodgkin’s lymphoma when we were 16 years old. She lost the battle when she was 19 and I know she is by my side like I was at hers cheering me on. Does it really matter what kind of cancer a person has to have to be considered more important than the other? For most, if they visually can’t see the effects of cancer, then they assume it must not be that bad. Well it is bad. It has not only changed my life but my family’s as well.
I have always had good eating habits and exercised when I could but now that I have had something so evil inside my body I am more aware of what goes into it then ever. Not just with food but anything that is put onto it. I try my best to eat organic and cook for myself when I can. I use botanical vegan beauty products by Arbonne and I practice Hot Fusion™ Yoga at least once a week to keep my sanity in check and attend the gym as well for a minimum of 30 minutes about three times a week. I also walk every morning because I have a dog, thank goodness, because he is the one that gets me moving every morning. Believe me, I’d rather spend all day in bed. Sometimes I will give myself one of those special days but I will not spend my life sleeping it away no matter how weak, exhausted and bummed out I might be. Punch the voice inside telling you that you can’t do anything productive today so it will shut up. I punch it in its face pretty much every day so when and if the day comes that the cancer returns I am ready for that fight; a fight that will end with the trophy in my hands.
There are key elements that I remind myself daily:
Stay Positive! It is so important to find the positive from all your thyroid trials and tribulations. For me, that meant establishing a healthy lifestyle and sharing knowledge and awareness with others.
Don’t you dare let anyone make you feel guilty or shameful for the situation you are in.
Don’t you ever let anyone dismiss you and your health.
And above all, remember to make your well-being your priority. No matter what- You CAN do this!
You are a thyroid warrior.
About Jessie L O’Donnell
Jessie L O’Donnell is a South Florida based portrait photographer, thyroid cancer survivor, artist, yogi, and hound mom sharing her love with the world. Through her powerful photography and writing, she captures the emotion of her suffering and finds much needed healing. She lives in Florida with her hound dog Walker. You can find Jessie on her website Jessie Lee Photography and on her Facebook page.