I may be the only person in the world who loves hospitals.  I just like the mix of people – all walks of life congregating in a place devoted to wellness, to making us better.  It’s where professionalism meets compassion.  I thoroughly enjoyed all the volunteer work I’ve done in hospitals, so maybe that’s one reason why I feel at home here.  Or maybe it’s because hospitals are where I’ve come to spend so much time. 

So.  Much.  Time. 

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After weeks of diagnostic procedures culminating in a diagnosis of metastatic papillary thyroid cancer, my attention turned to treatment.  The first step: goodbye, thyroid! 

In August 2013, I underwent a six-hour surgery to remove my entire thyroid and several lymph nodes.  Of the 31 lymph nodes removed and sent to pathology, 21 tested positive for cancer. 

Surgery was later followed by radiation.  The radiation used to treat thyroid cancer is in the form of a pill, a huge horse pill that is brought to you in a metal canister and administered in a very specific way.  You can’t touch the pill, and the technician can’t touch it.  The whole thing was like something out a science fiction movie.  I half expected smoke to seep out of the canister when it was opened. 

Treatment Plan: Netflix

After the patient swallows the pill, they give off radiation.  So, when my science experiment was over, I was given very specific instructions on what to do next: go straight home and begin my quarantine.  Yes, I was quarantining even before the pandemic hit! 

My quarantine was three days holed up in our guest room with books, magazines, and Netflix.  I had a stash of food and a dedicated bathroom.  My stepson was at his mom’s, and my husband knew he was on his own.  It was only for three days, and we knew about it ahead of time, so we were able to prepare.  And for an introvert like me, it was kind of nice!

After the first three days were up, I still had strict guidelines to follow.  For the first seven days from ingesting the pill, I had to sleep alone.  I had to maintain a distance of three feet from children and pregnant women.  I had to avoid situations where I was close to people for more than five minutes, such as movie theaters and most everything else in life.  So… staycation continued! 

Better Than a Horse Pill

After radiation and quarantine, I went back to the hospital for a full body scan.  After this, I was cleared to start the next step in my treatment: medication.  Every day since that day in 2013, and every day for the rest of my life, I start my morning with a pill – Synthroid.  This replaces the hormones that my thyroid produced. 

I once had a pharmacist tell me that there are over 200 different doses of this medication.  200!  Since getting the right dose is critical, bloodwork is a staple for thyroid patients.  Through simple lab tests about every three months, our hormone levels can be monitored, and our medication adjusted as needed.  I have been on about five different doses over the years, but my current dose seems to be my sweet spot since I’ve been on it the longest.  I now only have to get bloodwork done once a year. 

Fast forward about six months from the last scan.  I’m going to work, I’m taking care of my family, I’m taking care of me.  I’m taking my pill faithfully every day.  And I’m cancer-free, or so I thought.  I started experiencing some swelling and tenderness in my neck, so I went back to the doctor. 

In May 2014, I had a CT scan which showed enlarged lymph nodes on the right side of my neck.  I remember that follow-up appointment well.  I remember asking the doctor what enlarged lymph nodes meant.  “Does this mean the cancer is back?” I asked.  I still remember the sinking feeling when he answered yes. 

Here We Go Again

For me, that was harder than hearing it the first time, way harder.  When this all started, I knew my sister had been successfully treated for the same cancer, and I knew, in the world of cancer, it was fairly mild.  So, I took a deep breath, braced myself, and went through the initial surgery, radiation, and medication – all with a view to beat this.  But now, here I was having to go through it all again. 

We had not beaten it. 

That summer, I went through radiation again – therapeutic I-131 radioiodine at a dose of 154 mCi.  Another horse pill, another quarantine.  In the fall, I was referred to the Cancer Center at my hospital.  I’ll never forget the feeling of walking into the Cancer Center for the first time – as a patient.  It was sad, overwhelming, and exhausting all at the same time.  I was so ready to be done with it all, but at that point, the end was nowhere in sight.

The result of my appointment with the oncologist was a PET/CT scan, which showed “intense activity consistent with metastatic thyroid cancer.”  Something about seeing it in black and white just broke my heart.  If thyroid cancer is the “easy cancer” then why was I still dealing with it?  When would my cancer story come to an end?

The Next Step

At that time, we were preparing to relocate for my husband to start a new job.  Since we would be having to change doctors anyway, and since we would be closer to my hometown of Jacksonville, Florida, we switched my care to Mayo Clinic, where I have been seen ever since.  

In October 2014, we met with an oncologist and an endocrinologist there.  My endocrinologist, who is my main doctor, is a past president of the American Thyroid Association.  His resume is as lengthy as it is impressive.  We felt relieved to be in such good hands since we wanted to tackle this aggressively. 

A few more months, a few more ultrasounds, a CT scan, and a biopsy by fine needle aspiration all led to a second surgery.  In February 2015, I had a subsequent neck dissection to remove more lymph nodes.  (I don’t have any more thyroid tissue left to take out!)  The second surgeon cut along the incision from the first surgery, using my long scar as a guide. Of the 25 lymph nodes that were removed, this time only five were cancerous.    

The next few years unfolded in a pattern of Mayo visits.  I had ultrasounds to check for enlarged lymph nodes.  I had bloodwork done regularly both there and at my local lab.  My Synthroid dose was adjusted as needed.  I had another fine needle aspiration biopsy.  And I waited.  I waited for the all-clear, the words I wanted so long to hear – cancer-free.