Digging Through The Thy-Archive
As I think back over these last five years that I knowingly battled you and your incompetence, I wonder where you are now, if anywhere. I imagine you were incinerated shortly after my thyroidectomy two years ago, the papillary tumor the only portion of you deemed worth holding into. Though you are physically gone, your impact remains.
Last month I recently moved from the apartment and the city I lived in the entire time I was trying to fix you to a new city 150 miles away. As I packed, I came across page after page after page of medical documents, the dates on them framing the thyroid disease related failures I endured. These artifacts tell only a portion of my harrowing, life altering journey with thyroid disease and ultimately, thyroid cancer.
There was the unredeemed prescription for an anti-depressant from my initial misdiagnosis of “severe clinical depression,” the HMO statement from the appointment I demanded after I was told my TSH wasn’t high enough (7!) to warrant replacement hormones; the appointment happened two days after I bombed a job interview due to brain fog.
Then there were the prescriptions sheets from when I was a graduate student with severe brain fog, barely holding onto to passing grades with my very brittle fingernails (I flunked out), the appointment reminder for FNA number one that never happened because the nodule shrunk, and the initially innocent reminder for my yearly ultrasound that I looked upon happily because I had lost weight, was feeling really good, and wanted to share that with my doctors. From the same year, there was the little purple notebook with my sloping, unorganized notes from a conversation I had with my thyroid guru the day after he told me my FNA was malignant and that I had thyroid cancer.
That, dear thyroid, is only the beginning of my archives! There were copies of Mary Shoman’s books that helped jump start my 81 pound (and counting) weight loss, medical textbooks on thyroid cancer, pages and pages of research on RAI, copies of standing lab orders, a trillion paid bills to my endo, PCP, therapist, and many books on cancer, chronic illness, and what the hell this is all supposed to mean at my young, yet weary, age. On top of all of that, I also came across my initial research into how exactly anesthesia works after suffering an “IV failure” during my thyroidectomy that left me with full-blown PTSD. Then there were the complaint letters to the hospital, the state medical board and their unsatisfactory responses. “Unfortunately, anesthesia can be traumatizing even when the anesthesiologist does everything right,” is one unforgettable highlight of the response from the state medical board. Did everyone else see that on the informed consent form?
With a degree in history, I fancy myself a documenter of life, but this was not what I had in mind. I was once blind to the medical world and going forward with my plans to become an academic and a professor, teaching others about the importance of the past so we can face the future armed with the knowledge of other’s successes and failures with similar endeavors. In a way, that is what patients are doing when we talk about you and your many failure and malfunctions on the Internet and in support groups. We are creating a social history of our disease so that those who follow can learn from what we all went through with you.
Now that I have left the city where I spent so much time sick, I think about how much better I feel since you have been gone. No more rollercoaster emotions, moon face, brittle hair and most importantly, no more questioning about what is truly wrong with me. Some of the brain fog has never gone away and often I think I have lost IQ points when I cannot pull a word to the surface of my brain. But your initial failure was the catalyst that launched my own personal reclamation project and added years onto my life. When you allowed that tumor to flourish, it only steeled my resolve to continue my project.
Leaving “home” of course, does not bury our past together. You and I are still in this forever, till death do us part. I now have to hire a new thyroid guru even though we are no longer together, which sounds a lot like hiring a marriage counselor after the divorce is already final. But thyroid gurus do not grow on trees and the one I had was a particularly potent mix of caring and brains, so thanks to you, thyroid, whenever I think about the need to hire someone new, I cry and miss my ex-guru as if he were my ex-husband. Thanks a lot!
I have lived in my new city for a month and of course, challenges remain. The reams of paper your failures generated remain unfiled and I know I need to put them somewhere or destroy them as I get annoyed every time I see my former HMO’s logo out of the corner of eye. My new pharmacy was out of my dosage the first time I needed a refill and I cried on the walk home, so tired of all the maintenance I require. My ex-thyroid guru gave me a couple names of new potentials but neither are on my new HMO. As my quest for a new endo continued, I asked one of my new colleagues, telling her I had thyroid disease instead of cancer in an effort to avoid being branded with that kind of reputation right out of the gate. She had nothing, and I ended up choosing someone without a referral.
It is true that “wherever you go, there you are.” I tried to leave much of your baggage down south. I threw out or donated as many things as I could from that era of my life, but yet I still dragged all of that paperwork up here, the physical scar, the emotional ones, and the good things too: my successful personal reclamation project and the kindness and open heart of my thyroid guru who inadvertently taught me to own my feelings and to not fear my vulnerability. I carry it all with me as I move onward and upward, hopeful that ultimately, those good things make me lighter.
(Bio): CW is a two-year survivor of thyroid cancer, never returned to graduate school and currently works as a fundraising professional.
Tags: Dear Thyroid Letters, Digging through the Thy-Archive, impact of thyroid cancer, thyroid cancer, thyroid cancer blog, thyroid cancer group, thyroid cancer misdiagnoses, thyroid cancer patients, thyroid cancer support, thyroid cancer symptoms, thyroidectomy