The Silent Disease

Thyroid Cancer

9 weeks after a full thyroidectomy

(image via Jessie Lee Photography)

Written by Jessie L O’Donnell, Thyroid Cancer Thriver & Owner of  Jessie Lee Photography

Do you know who Hakaru Hashimoto is? Of course you don’t. Do you know all the functions of your thyroid? More than likely not. Have you ever even thought of your thyroid health? Probably never.

Two years ago at 29 years old, during a routine visit to the gynecologist, my life changed forever. My doctor decided to feel my thyroid and thought she felt a nodule. She passed it off as something that was ‘no biggie’ but suggested that I find an endocrinologist to have it checked. What the hell is a thyroid nodule? They are growths that appear within the thyroid gland. Why? Well, no one really seems to have the answers. They just do.

That one little ‘no biggie’ turned my life around and upside down in a short amount of time.

My endocrinologist ordered an ultrasound and blood work to see what was going on. We discovered that I had three nodules on the right thyroid lobe and an autoimmune disorder called Hashimoto’s Thyroiditis where the immune system attacks the thyroid causing the thyroid to become inflamed, essentially forming a goiter. Ugh…a goiter. I’m going to be honest. The word goiter freaks me out. I remember being a child and seeing women with very large goiters and not understanding why their necks looked like that and feeling scared because no one explained to me what it actually was. Now here I was, sitting on a doctor’s table being told that is exactly what I have going on. GREAT. SUPER. What now?

Well, Ms O’Donnell, your blood work is normal and all within normal range. And the more nodules the better. If there is only one singled out nodule that usually means cancer.

Okay…bring on the nodules then.

Every 6 months I would receive an ultrasound and have my blood work done. The nodules were slowly growing with every ultrasound but my blood work was normal and my doctors didn’t seem to be alarmed so I tried to not be as well. I started to suffer from mood swings, sleeplessness, depression and started to have major problems with my cycle. My next appointment I decided to inquire about it. That is when my doctor seemed to become alarmed. After many tests and questions, I was then diagnosed with PCOS (Poly Cystic Ovarian Syndrome). She also thought that I may be insulin intolerant adding to the causes of PCOS. Those tests were also positive. I was put on Metformin, a Type 2 diabetic drug to help suppress glucose that I need to be on for the rest of time especially if I would like to have children. After being on Metformin every day, twice a day, things in that department seemed to be figured out.

But what about the discomfort in the right side of my neck? Why was I waking up some mornings with a voice of a woman who smoked for the past 20 years? Come to find out, my goiter was pressing on my vocal nerve. I would have one sided conversations with my thyroid…why are you doing this to me? What caused you to turn into this? Please stop hurting me. Why does it seem that I am the only one at my age suffering from this?

I went in for my ultrasound May 2013. The technicians seemed to be alarmed and tried acting like they were not until I demanded what their wide-eyed expression was for. They showed me the comparison of my ultrasound 6 months prior to the present moment. I didn’t even know what I was looking at but my jaw dropped. Something was very wrong and not one person in the room could tell me what the problem was and I had to wait a week to find out…ugh.

The ultrasound showed that the nodules grew much faster than they had in the months before but it also showed that the Hashimoto’s was getting pretty severe. But my blood levels were still in normal range. If they were in normal range then why did I feel like ‘hulking out’ on people for no reason or why did I want to crawl into a corner for weeks in the dark? During all of this medical confusion, I was dealing with serious stuff in other areas of my personal life. My boyfriend of two years who lived with me dumped me leaving me with rent I couldn’t afford on my own, my father receiving emergency open heart surgery, my Auntie passing away suddenly, I had to move for the what seemed like the 100th time and while doing so scrape up whatever positive energy I had left to celebrate 100 milestones of the people close to me whether being engagements, babies or weddings. The only thing that helped me not crack and being put into a crazy house was yoga. Not just any yoga; hot fusion yoga. The only time that I didn’t have to think about anything in life for a glorious sweaty hot 75 minutes but me and my well being which I realized needed to be my number one priority. My yoga practice flowed into my daily life helping me deal with negative thoughts and negative events.

A biopsy was ordered to have my nodules tested which came back as benign. A voice in my head kept saying that something was wrong. I was traveling up to Boston in June and got an appointment with the best thyroid surgeon, Dr Randall Gaz at Massachusetts General Hospital. After examining all my reports and a physical, he suggested on calling him when I could not handle the pain anymore. Because the biopsy report came back as benign, my situation was not considered an emergency. I went back to south Florida with the voice constantly repeating itself in my head. It was no joke. I would be having conversations with people and this voice kept interrupting my thoughts. I couldn’t take it anymore and the pain I was dealing with every single day. I called Dr Gaz and scheduled surgery for December 2013.

The plan was the removal of my right thyroid lobe since that was the only problem area. He was very confident that the left lobe would take over the full function of the thyroid. I get to keep part of my thyroid?! Yippee!

December 9th, 2013 at 5:30 am, I walked through the doors at Mass Eye and Ear Infirmary. I was prepped for surgery and waited with my parents by my side. We said our goodbyes and was told I would see them in about 2.5 hours.

I woke up in recovery very confused. The clock that I could barely see said 5pm. I became even more confused, especially when I started to heave and vomit up stomach bile. My body did not handle coming out of anesthesia well. To vomit right after having your neck cut open is a pain I can’t describe to anyone. My surgery took 9.5 hours. The thyroiditis got so bad that it was sticking to everything and would not let go of my vocal nerves. Dr. Gaz was determined to save my voice and he did.

The next morning Dr Gaz came to take my stitches out to then put butterfly bandages on my incision so the scar would be minimal. With a calm and concerning voice he said to me “I had to take out the thyroid and give you a full thyroidectomy.” My eyebrows came together and bunched up since I couldn’t really speak. “You had cancer and it was pretty bad. I had the pathologist test the right lobe before we closed you up and when that tested positive, I decided to take out the left lobe as a precaution. We won’t know the results with that until a week from now. So that means you developed a large amount of cancer within 5-6 months. I want you to see Dr Ross downstairs for treatment to get rid of any cancer cells that are left that we cannot see. Ok?” I shook my head as if I understood.

What the f*ck was happening to me? The pathology report on the left lobe came back positive. I had cancer all over my entire thyroid. I knew something was very wrong and thank god I listened to that annoying voice inside my head. Now what? I’ll tell you what….the most agonizing weeks were in front of me. With everything I read about thyroid surgery, I thought this recovery would be a piece of cake. Far from…so far from. I battled with debilitating migraines to the point I honestly didn’t care if I died. If I had to cough or sneeze, it felt like my neck was being torn open and exploding. Sleepless nights and days for that matter. Emotional states that were so to the extreme my stomach turns just thinking about it. The fatigue I dealt with was like nothing I have experienced in my life. It wasn’t about not sleeping, it was about my body almost feeling like it was shutting down. But life had to go on. I had to be back to the grind in 4 weeks. I looked through my closet and found a smile somewhere back there and slapped it on. I had my auto-answers to the same questions ready; How are you? Getting there. How does your neck feel? Better. Are you getting rest? Trying to. And all those answers were said with the smile I found in my wardrobe.

It is all silent pain. Silent suffering that no one understands except for the other people who may be suffering similar problems. I wish I found the Facebook pages that support the millions of people suffering from thyroid problems and diseases. It would of helped me in so many ways leading up to my surgery. All the reading I have done shows that every single patient’s problem is unique and needs to be treated that way…not by a ‘one size fits all’ type of prescription.

I don’t feel like myself because I am not myself. So many things feel like they are missing besides the obvious. If there is someone in your life who may be suffering from thyroid problems or other silent diseases please support them. You may not understand it (hell, I don’t even understand the things I feel at times) but they need you. They need you to just listen and be aware of what they are going through. And most importantly, DO NOT take there severe mood swings personally. If they snap or seem to take a step back from all their relationships, let them. Show up at their door unannounced with a smile and hug. Hugs are really important and sometimes that is all the person needs. Don’t point out their scars, they know they’re there. I don’t care how curious you are about it. That one question may bring a person back to a difficult time they are trying to move on from.

This month I have to get a heavy duty radioactive iodine treatment back in Boston. I’m hoping after I am done glowing in the dark I can become myself 100% again.

I will be on prescription for the rest of my life to do the job of my missing thyroid gland. It has been 9 weeks since my surgery and I’m still trying to figure out when my body will balance out or if it really ever will.

I have no thyroid because of cancer.

I had no clue how important that butterfly shaped gland was until I lost it.

And I didn’t even get to say goodbye.

If your body is making changes that no one seems to be able to figure out, get your thyroid checked.

With everything that happened to me in the past two years, I had no choice during that time but to roll with the punches. One after the other and getting back up. We have all heard the famous phrase “Good things come to those who wait.” How about those who also deserve it and shouldn’t have to wait anymore?

I was blessed with someone who has been nothing but loving, caring, compassionate and understanding for who I am and what I am currently going through. He may just be one of the most beautiful human beings I am so fortunate enough to have entered my life at the perfect time.

Thyroid Cancer

Waited? You got that right…

Thank you, Ryan

About Jessie L O’Donnell

Jessie L O’Donnell is a South Florida based portrait photographer who was diagnosed with thyroid disease and other thyroid aliments in 2011. Two years after being diagnosed and receiving a full thyroidectomy, she realized she was not alone after discovering a handful of support pages and websites. She was inspired to write for others after reading so many other personal stories, to share her experiences and offer insight. Through her powerful photography and writing, she captures the emotion of her suffering and finds much needed healing. She currently lives in the Fort Lauderdale area with her hound dog Walker.

Website: Jessie Lee Photography

Facebook: Jessie Lee Photography

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About Dana Trentini

Who knew that little butterfly-shaped thyroid gland at the base of my neck could affect my life so completely? I founded Hypothyroid Mom in memory of the unborn baby I lost to hypothyroidism. Winner of two 2014 WEGO Health Activist Awards: Health Activist Hero & Best In Show Twitter. *Hypothyroid Mom includes Affiliate links. Connect with me on Google+

Comments

  1. My name is Naomi hazel,someone came to me one day and asked me about my neck they told me it looks like I have tirode and from there I went to the doctor she send me to took a blood test and some other test and she send me to a specialist to take some more test blood and etc. And when I went back for my results she said everything seems alright except for my blood its low she say I’m anemic. But my neck really bothers me at night when am sleeping. The doctor says my neck is just naturally big but im okay, my next appointment is in January. Can someone please tell me what I can do to help myself out.
    -from Aruba.

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