I don’t often talk about my thyroid cancer story. I’m the author of a book on young adult cancer. I’m addicted to blogging about the 20 and 30-something cancer experience. And, I step behind podiums, microphones, and into radio studios to talk about sex, dating, work, finances, and family life in the midst of young adult cancer. But I focus so much on being young with cancer, that “young adult” almost seems more like my cancer type than papillary carcinoma.
I was diagnosed with papillary carcinoma when I was 27 years old. “You’re young, you’re a woman, you’ll do fine!” is what my doctors told me again and again. And it was true: I was young, a woman, and I did do fine, that is if fine means not dying. I was fine if you compared me to a patient with medullary thyroid cancer. I was fine if you compared me to a patient with pancreatic cancer. I was fine if you compared me to a patient worse off than I was. But I was not fine if I compared myself to the healthy young choreographer I was before 19 malignant lymph nodes took anchor in my neck.
My case of thyroid cancer isn’t typical. For many, many people, papillary thyroid cancer is a six-month ordeal. It is hard and scary but then they often move on; cancer becomes a past tense and does not recur. But I’m now 38 and have been wrestling with this disease for ten years. During this time I’ve lost a ton of weight and look scary skinny. I’ve seen my hair thin, my skin dry. I’ve seen my short-term memory deteriorate. My emotions have roller coastered, and my anxiety spiked. I’ve been shoved into scanners, had two doses of radioactive iodine treatment and two surgeries. And because I’m one of the rare patients who does not uptake radioactive iodine, I’m still living with tumors in me.
In the last ten years, I’ve adapted to and come to accept my new body and love my new mind. I’ve battled insurance companies and won. I’ve hunted down great doctors and tapped their brains for the best perspectives and opinions in the field. I’ve learned to think critically about medicine and my care. I’ve become an extraordinarily proactive patient.
I don’t know when my cancer will go away. It might never go away. But I’m leading a really normal life with papillary carcinoma still in me. Yes, I’m here to tell you it can be done. For me the biggest challenge has not been in fighting cancer. (I’m a pretty tough cookie and fighting comes naturally to me.) Instead my biggest challenge has been learning to live with it.
Kairol is the author of the book Everything Changes: The Insider’s Guide to Cancer in Your 20’s and 30’s and the blog Everything Changes Blog.