I’ve been keeping a secret for 353 days
It hasn’t been easy. It has not come without feelings of guilt and betrayal – because honesty is the cornerstone of all relationships. Keeping a secret is a fine balance between hurting the people you love by telling them your news or risking resentment for not telling them. My decision to keep this information to myself was out of a desire to keep those I love from feeling the emotions of worry and fear – something I was feeling myself. I wanted to spare them from that considering I didn’t have all the answers to the questions they would be asking.
It all began so innocently
My secret began on March 9, 2011 when I sat in my doctor’s office and asked her to feel my neck. The large lump. On the left side. Yes, that one. Could she feel it too? That wasn’t normal, was it? I wasn’t imagining that it shouldn’t be there, was I?
I was right to be concerned. An ultrasound was ordered. While we didn’t want to say it out loud the elephant in the room was unmistakable. We were both worried it was cancer.
I would get really used to playing the waiting game
I waited. And waited. And waited for a call about an ultrasound of my neck to investigate what we guessed was an enlarged left hemisphere of my thyroid gland. I would wait for six months before I finally had my ultrasound on August 3rd.
On August 25th I finally received my ultrasound results. Verdict? The left hemisphere of my thyroid has been nearly completely taken over by a 4cm nodule and another 1cm nodule. My right hemisphere also contained a 2cm nodule and multiple other nodules about 1cm in diameter.
My heart sunk.
A million scenarios rushed through my brain. What did this mean? Are they cancerous? Benign? How do we find out? What do we need to do to find out? When can we find out? What if they are cancerous? All of these questions and a million more rushed through my head at the speed of light. I felt overwhelmed. I felt sick to my stomach. I hugged my two little boys tightly and wept as I rocked them imagining all the worst case scenarios. If this was cancer had it spread? Is it treatable? What is the survival rate?
I kept going back to what my doctor kept telling me – “If you’re going to get cancer, thyroid cancer is the one to get. Rare, nearly 100% treatable and in most ways almost a non-cancer“.
But still that horrific word kept surfacing – CANCER.
Getting a diagnosis wasn’t a straight forward process
I waited nearly a month from my ultrasound to have what in layman’s terms is called a “hot and cold scan” on September 8th. I was injected with radioactive iodine in my arm and then about 15 minutes later I had a scan performed over the span of about 45 minutes where they took four diagnostic images. The radioactive iodine is supposed to be “uptaken” by non-cancerous nodules indicating the thyroid is functioning normally and is referred to as “hot”. If it isn’t uptaken by a nodule it indicates a probably malignancy and is referred to as “cold”.
September 13th I met with my family doctor to get the results of the scan.
Verdict: all the smaller nodules came back hot. The large 4cm one came back cold. Suspected malignancy.
My whole world felt like it crashed down around me that day
I’m not going to lie. I sat there and began crying in my doctor’s office and she looked me straight in the eye and stated “You’re stronger than this. Don’t cry. Even if it is cancerous, you’re stronger than this.You’re going to be fine.”
Have I mentioned how much I love my doctor?
Yet still I waited for a definitive answer
The next step was a requisition for an appointment and biopsy with an ear, nose and throat specialist or ENT. My family doctor ordered it and finally, after three months of waiting I had an appointment on December 7th.
Dr. Hart was amazing. He ran over the different scenarios of the outcome of the results and honestly didn’t tell me anything I didn’t already know from my own research and based on what my family doctor had told me. He manually examined me and then determined he not only wanted to biopsy the large nodule in my left hemisphere (which he could see and feel without issue) but also wanted to biopsy the 2cm nodule in the right hemisphere. He could not accurately determine its exact location by feeling so he decided to postpone the biopsy and do it with the guide of an ultrasound. He assured me that it would be completed before Christmas.
Waiting. Waiting. Still waiting…
I left the appointment still no further ahead and now I had to do more waiting. I also realized that it was quite possible that I would find out my biopsy results right before Christmas. Would I tell my family and friends then? Would I wait? It tore me up inside to pretend everything was just fantastic in my life when for months I had been on this hellish roller coaster ride of the unknown.
Christmas came and went. No call for a biopsy. I chalked it up to the insanity of Christmas but by the 3rd week of January I started getting antsy. I’d been waiting over 10 months now for an answer to what this lump in my neck was. I phoned my ENT’s office on three occasions – leaving messages each time. Each message was more urgent sounding in nature. I was getting frustrated. Finally on February 1st I got a call back from his assistant. I was having a biopsy the next morning at 10am. Obviously my file had been mishandled. I was livid but also relieved that we were moving forward in getting a diagnosis.
Getting needles stuck into your neck isn’t much fun
I had the biopsies performed on February 2nd. My neck was sprayed before each needle was inserted to numb the area which was pretty much pointless. The ultrasound was used to visualize each nodule and then the needle inserted, wiggled around and then the extraction of tissue was done. Each of the two nodules they decided to biopsy required three needle aspirations each. Not pleasant. Imagine being pricked with a pretty decent gauge needle nearly in the same spot, three times x 2. There was also a lot of blood that needed soaking up.
Things you don’t want to hear the doctor say but I heard:
1) after the first needle was done – “Uhm…I’m guessing you tend to bruise pretty easily?”
2) “Usually we tell patients they can take off the band-aids/tape, etc in a few hours. Uhm…if I were you I’d wait until some time TOMORROW…“
So, the worst part was the uncomfortable part of being stabbed with six needles and then the wiggling around of them and the odd sensation of feeling the tissue being pulled out. Gulp. It was pretty close to my collar bone, did bruise quite a bit and was uncomfortable for the rest of the weekend.
I received a call that despite results usually being in within 10 days that my next appointment with Dr. Hart would be nearly three weeks away – February 24th. More waiting.
Finally, the results of all that waiting
Which brings us to today. Results day. The day I would find out whether I did or did not have cancer of the thyroid.
I walked into the Dickson Building and went to the third floor. My stomach was in knots. My heart beating like crazy. I registered and then sat in the waiting area to hear my name called. Toes tapping with nervousness. I was either going to get the news I had been preparing for when the scan came back saying “suspected malignancy” or I was going to get the “all clear”. Which was it going to be? Was this going to be the day my life changed forever or was it going to be the day my life stayed the same?
As my name was called I took a deep breath and followed Dr. Hart into the room. I sat down. Already prepared to hear the results had shown malignancy in the large nodule. I had reserved myself to the fact I would be requiring surgery. I also knew that today was also the day that I could finally share my story with everyone. I was going to need support and most importantly I finally, FINALLY had a concrete answer to give.
A comedy of errors delays the results, yet again!
As he went to open my file to read the results it went flying out of his hand onto the floor. He laughed and quickly tried to gather up the loose papers as I sat there thinking “You have got to be kidding me!” and tried to take a deep breath and calm myself down. Here I was in this damn chair, nearly a year after I first reported the lump to my family doctor and I’m 2 seconds away from knowing the final answer and my file goes flying onto the floor. Was I on Candid Camera?
He shuffled the papers and placed them back into my file folder. Glanced down at them and then looked up with a smile on his face and said…
*tear of relief*
*tears of happiness*
*tears of gratitude*
He said “I don’t often get to deliver that news so this is great!“
So now what?
I will have a follow up ultrasound one year from now for monitoring purposes and have been instructed that if anything should change or it begins to bother me through obstruction of my breathing or swallowing or I notice a marked increase in size then I am to report it to his office.
They say worry is a like a rocking chair. It gives you something to do but you won’t get anywhere. This is why I’ve kept all of this to myself until now so as to avoid giving you something extra to burden you with. I realize just now revealing this pretty heavy news to you may seem selfish and I understand those feelings of resentment you have.
Trust I chose to do so knowing that I saved you a year of worry and instead am able to give you a reason to celebrate with me. If I appeared to be preoccupied or burdened or not myself at any time during the last year it most likely has been during one of these trying times when I was trying to deal with the lack of information and all the frustration that came along with that. Keeping all of this to myself was incredibly difficult on so many levels and on so many occasions.
In the last year I have experienced the loss of people I love due to cancer and am currently cheering others on in their fights. I feel incredibly lucky that even if my test results had been the opposite that I was still going to be considered extremely fortunate to only have a highly treatable and contained version of it. I feel a renewed sense of vitality and of gratitude and endeavor to not put off things I have been.
A celebration of gratitude
This whole experience has been a major catalyst in my decision to stop trying to juggle so many balls and to decide what is a priority in my life – to listen to my dreams and act on them. Make steps towards achieving them. Spending time doing what brings me the most joy. I do so knowing that many others are not afforded this luxury and the test results they receive are much different than mine were. I feel extremely humbled, grateful and relieved.
I ask that you do only one thing as a result of reading my story – don’t put off getting things checked because you are scared of the outcome. It could save your life or it might also give you reason to celebrate.
Tonight, I celebrate!