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The Invisible Battle

by Stephanie CasasThyroid Cancer SurvivorJuly 19, 2023View more posts from Stephanie Casas

The Invisible Battle

It all started when I was diagnosed with Graves disease and thyroid nodules in the summer of 2020. I was told I was a complex case but my endocrinologist never said the word cancer to me, so it never even crossed my mind. Being 33 years old and diagnosed with papillary thyroid cancer is never something I could have imagined. 

We often get labeled as having the “good cancer.” Yes, papillary thyroid cancer has a high rate of survival, but who actually wants to have cancer? Who is thinking about this during their day-to-day life? There are AYA thyroid cancer survivors who have had as many as five surgeries and also some have lost their lives in this battle. We never actually feel safe. We, too, get scanxiety whenever we have our follow-ups. We have to constantly be aware of our bodies because at times our bodies decide our hormone replacement dosage is incorrect. 

It is easy to say it is the “good cancer” when you are looking from the outside. But when it’s in your body and you have to make the decisions, none of it is easy or good. It’s challenging to accept a part of your body is fighting against you while at the same time, your body is trying so hard to fight for you, to let you know something is off. 

Thyroid cancer seems easy from the outside because I have my life, but it has brought other issues along with it. I can list four ways thyroid cancer has affected my life. 

First: Being told I couldn’t have children for two years. Being in my 30s and feeling “ready” for kids, this was really hard news to hear. I have been married five years now. Parenting is an experience my husband and I want to share, but also one we had to hit the pause button on due to my treatment.

Second: During surgery, two of my parathyroids slipped. The parathyroids are responsible for helping your body produce calcium. The day after my surgery, I experienced tetany, muscular spasms where my hands were stuck in positions that did not allow for movement. It was a frightening experience. Six months after surgery, I was diagnosed with permanent hypoparathyroidism. Since then I have taken calcium to avoid tingling feet and hands as well as joint pains, along with calcitriol daily to help with absorption. I started off taking 10,000 mg of calcium daily just to get by. I am now down to 1,200 mg, which is still a lot to take in one day. Taking these supplements long-term can cause many negative side effects such as calcium deposits in the brain and deposits of calcium in the kidney. There is a study being conducted for FDA approval for an injection to reverse this condition. It is something that the hypoparathyroid community is very much looking forward to.

Third: From a young age, I was very anemic and my levels became controlled again in my late teens. After my second radioactive iodine treatment, I became severely anemic again with a low platelet count as well to the point that I needed to see a hematologist and take iron twice a day for three months. This is currently something I am still monitoring and am trying new methods to get back to optimal levels with frequent blood work and immunity-focused supplements. 

Fourth: After my surgery and radioactive iodine treatments, I felt the weight gain coming on. It did not matter what I did. I watched what I ate and I was as active as I could be. Many days, the fatigue would just drain and debilitate me. It is still something I deal with today. There is a limit to how much I can do in a day and I have to consciously plan my week out. The idea of feeling “normal” again is something I have put past myself. It was a rude awakening when I realized I was looking forward to feeling normal again, but it is not something that others experience even 10 years out from surgery and treatment.

Without my faith, family, friends, and support groups, I would feel so alone on this journey. I have met such amazing AYA survivors on this journey and it has been a blessing to be diagnosed in an era of social media where we can all connect across the globe. Even though I struggle with my calcium and slight anemia, I am optimistic about the road ahead. I am now working with a coach to achieve my weight goals because I have reached the point where I have tried so much and nothing else has worked. I am slowly seeing progress in this area of my life. 

This just scratches the surface on the ways in which cancer has been anything but invisible in my life. I take a pill every morning to function somewhat normally. Although I am grateful to have this option accessible to me, the thought of needing insurance or having the ability to pay out of pocket for my medication and care to survive is a scary feeling. Nevertheless, cancer has taught me a new appreciation for life. I am so much more than my diagnosis. 


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