Mindfulness. Is it a state of being? Understanding? I’m not quite sure, but I think I have finally gotten there. By there I mean a state of mind where I’m not filled with fear or anxiety of what’s next, but rather comfortable with the decisions I have made so far. I talk about “mindfulness” as a place, because I’m not sure if it’s something you can be all the time. I think it’s something you learn, and you practice, like meditation, or the place you go when you feel overwhelmed, like the beach. There’s something about pausing to take some deep breaths or the sound of the waves crashing… it brings you back… but mindfulness is more than that; it’s a place of acceptance.
For those of you who are not aware, September is Thyroid Cancer Awareness month and this month’s Perkatory topic is Mindfulness: being present during treatment. The majority of people consider treatment for thyroid cancer to include removing your thyroid, possibly some lymph nodes, radioactive iodine, and taking a pill for the rest of your life. The End. It’s the “good” the “easy” cancer. The reality is that that’s only the beginning. There is no “good” or “easy” cancer. That little pill is better known as “Thyroid Hormone Replacement Therapy,” and that treatment goes on for the rest of your life.
I don’t think anyone really prepares for you what life without a thyroid is like: the weight gain or loss, feeling hot or cold, emotional or depressed, the brain fog, your heart racing, and the list of possible symptoms goes on. They don’t tell you that you’ll be getting your blood drawn every three months or that you’ll have to change prescription brands and/or dosages multiple times in order to find the right dose for you. And, even then, the dose that works for your labs isn’t always the dosage that makes you feel like you. Eventually, you get to a point where the labs and ultrasounds are only done annually, but the scanxiety is always there to haunt you. It just feels like there’s always something.
I was at a conference recently, and the speaker at the moment was discussing diversity, equity and inclusion (DE&I), and she said, “Remember to be mindful of your true self.” She was referring to how many times we all just try to fit into whatever norm is required of us, and how in reality it hinders our overall performance because we aren’t being true to ourselves. This hit me like a brick.
I was diagnosed with Thyroid Cancer in 2014 at age 26, and as many have heard me mention, I was extremely private about my diagnosis. In a way, I was hoping I could just sweep it under the rug and go on with my normal life. But it was easier said than done. I had the worst FOMO (fear of missing out) during my recovery. All my friends were busy in grad school or working towards their careers, and I just felt like my life had been put on pause while everyone else’s went on. I had gained weight, and I was constantly tired, but the one thing I knew how to focus on was work. So I did. I was at a great point in my career, and a few months later I was at a work event for emerging leaders, and someone higher up, that did not work with me day to day, pulled me aside to tell me how they had been “meaning to reach out” and asked me about my health, and I just shut down. There I was, already feeling anxious about presenting, and all the sudden it was like the rug had been pulled out from under my feet. I took a deep breath and answered, “I’m doing great, thank you.” That was a lie, but I made it through that day. It just felt like no matter how hard I tried, I couldn’t get away.
It took time to start feeling like myself again, and then at 29, the cancer was back, or in reality, still there… I was upset to say the least. The thyroid cancer has metastasized to the lymph nodes under my collar bone. I felt like everything I had fought to control was out of my control. The reality being that I was never really in control.
Yet, something changed after this second surgery. I realized I had been keeping this huge part of me, my true self trapped inside, and I wanted to share my journey. So, I started a blog to share my story. I wasn’t quite ready to openly talk about it, but writing it was extremely therapeutic.
Then the opportunity to switch jobs appeared a few months after my second surgery. I remember calling my mom in tears. I had interviewed, and I got the job offer, but there it was again, like a dark cloud looming over me. History of thyroid cancer. There would be approximately 30 days between me leaving one job and being eligible for health insurance at my next job. What if I got sick? Needed more Synthroid? Surgery? Everything that could possibly go wrong ran through my head. I told myself to stop and take a deep breath, then I asked myself: aside from my health, what was stopping me from taking this job? The answer was nothing, so I went for it.
The transition was good for me; I was in a new place, where no one knew me or about my history of thyroid cancer, and it was such a relief. It was one step in a series of many, to prove to myself that I was still capable of doing big things. Next, I decided to study for the GMAT and apply to grad school. I got in. Then I decided to train for a Sprint Triathlon. I finished it. While I had become more comfortable with the new me, I wasn’t completely the true me. The true me was spontaneous and entrepreneurial, but the new me feared a life without assurance. I was no longer a person that could just go without health insurance, doctors’ appointments and prescriptions. It was non-negotiable.
During the pandemic, I hit a hard spot. I was stressed and overwhelmed. I had graduated but hadn’t invested in the job search because of the pandemic. I didn’t know what to do. How to tackle work and the job search. For the longest time, I started to think I was stuck. The feelings of thyroid cancer taking over my life started to creep up again. The need for health insurance, so I could get Synthroid and stay alive. It just didn’t seem fair.
I needed a change. I needed something to work towards, so I decided to make a plan. A timeline with financial goals. If I left my job, how long did I expect to be unemployed? How much would I need to cover rent, food, insurance, etc.? Was it realistic? I planned to see all my doctors before my cut-off date, but the one I was most nervous about was my endocrinologist. I just felt like I could do everything right, and this could be the deal breaker. When I went in for my appointment, the endocrinologist did an ultrasound. My neck looked great, but then we discussed my labs. They weren’t great. My antibodies had gone up instead of down for the first time in four years. He reassured me that it was common for antibodies to go up and down like a roller coaster during the first five years. That we would wait a few months, do bloodwork again, and take it from there. I felt defeated that day. The thought of waiting until October to do bloodwork again to then decide my future. I felt the anxiety creeping up again. So again, I asked myself: aside from my health, what was stopping me from leaving this job? The answer was nothing. I stuck to my plan, and a little over a month later, I put in my two-weeks-notice.
Mindfulness is realizing where you’ve been and where you are going. It’s about not allowing your past to stop you from realizing your future goals but also understanding that you may need to take the path less traveled to get there, but that it will be completely worth it.
The past two months have been pretty incredible. I have had the opportunity to soak up life and all the people I love. To continue to grow ThyTabono, the blog I started that is now a nonprofit. Most importantly, to know that I’m not alone. This month in our group chat, one survivor mentioned feeling anxious about the smallest of things, and many others shared the mutual feeling. We discussed anxiety, depression, fatigue. But even more importantly, we shared coping mechanisms: taking a deep breath, going outside, getting a moment of solitude. Being present as a Thyroid Cancer Survivor is about knowing your body best; it’s advocating for yourself and being comfortable being your true self.