I’ve never really been bothered by going to the doctor. I know a lot of people hate the waiting rooms, the medical tests, and the wasted time, but I’ve always been rather ambivalent to the whole experience.
Then cancer happened.
Like life, cancer doesn’t have a how-to book. There is no magic formula, no quick and easy cure. There is no one that can tell you exactly how you will need to face the disease emotionally, physically, and mentally. But you can learn through others’ stories and experiences, strengthened by the hope and knowledge that there is another side to it all.
I hope my story is that to someone else.
When I was little, my pediatrician told my mom that I would never be a well child. It turned out that he was borderline prophetic, because over the more than fifteen years he treated me, I amassed a chart that could rival the thickest of the Harry Potter novels.When I was twelve I was diagnosed with a thyroid condition and put immediately on low doses of thyroid hormones. By the time I entered high school I already had several polyps on my thyroid gland that had to be closely monitored. My doctor was alarmed by the rate at which the polyps were growing. Surgery was imminent, cancer suspected. Then, suddenly, they shrank as quickly as they had grown.
The polyps came back to haunt me again this year. Just weeks before my 24th birthday, I was diagnosed with papillary thyroid carcinoma, or thyroid cancer.
Papillary thyroid cancer is currently the fastest growing cancer in the U.S., accounting for around 80% of all thyroid cancers and when caught early, which is most of the time, chances of becoming cancer free are nearly 100%. But statistics don’t tell you everything.
From the beginning this knowledge gave me hope. When you’re young and diagnosed with something like this, you want to think beyond short term, beyond what is medically defined at one year, five years, or even ten. I have decades to go. I want to write, travel the world, and go to nerdy conferences. But my particular cancer doesn’t always agree with those plans. What I didn’t realize at the time was that even when my tests showed no sign of cancer I would still have to face the long term repercussions of my treatment.
Another thing statistics don’t tell you is how many difficult decisions cancer forces on you. It’s amazing the number of decisions that you must make when you are least prepared to make any. They all had to be immediate: whether to get a second opinion, how to handle my extended time off of work, whom to tell. I checked everything off diligently and mechanically, focused only on the next thing I had to tackle, refusing to let my mind linger.
Aside from the medical reality of my cancer, it became immediately clear that I had to adjust to a new “lifestyle.” I couldn’t afford to take too much time off from work so I had to find a way to balance professional responsibilities with the demands of my health. I had two or three medical appointments a week for doctors’ visits, blood work, and scans. I walked the route from the hospital to my job more often in the first month of my diagnosis alone than I had the entire two years I had been employed. Time and energy were no longer to be taken for granted. I was lucky that my job allowed me a flexible schedule so that I could work from home when necessary to save the precious energy usually expended during my commute. The same standard applied to my social life. My friends came to me more than I went to them and I relied on the Internet more than ever. It was a new normal, at least for the time being.
I also had to tell about my diagnosis, little by little. I eventually found myself dreading the conversation because I often had to calm others more than I had to calm myself. By the time I had told close to a dozen family and friends I had my “speech” memorized: No it wasn’t deadly. Yes, I would need surgery. No, chemo wasn’t necessary. Yes, I was doing okay.
Thankfully, my mom was with me every step of the way. No matter what her schedule, or how last minute the appointment, she was there. She helped me tell my family, advised me on handling my insurance, and kept me calm. She took care of me during my recovery, even if she was not feeling well. It helped that she is also a cancer survivor and knows this road all too well and without her I would’ve had a much more difficult experience.
Finally came the treatment. This cancer frequently results in removing the thyroid because all thyroid cells must be destroyed in order to prevent a recurrence and to make sure the cancer doesn’t spread to other organs (metastases). In my case there were local metastases to the lymph nodes in my neck, which are not uncommon and did not lessen my chance of a cure by much, if at all. But it did mean a more radical surgery, leaving a scar on my neck that looks like a botched attempt to slit my throat from behind. The surgery gave way to weeks of neck pain and a nearly immobile shoulder that only just recently regained all of its strength.
I was also treated with radioactive iodine, a high-dose radiation pill that targets the thyroid cells specifically, killing whatever is left. Much more forgiving than chemotherapy or beam radiation, the treatment lasted just a week and had very few side-effects. Though it involved almost total isolation (thank goodness for the Internet) and a period of dealing with my body’s poor reaction, I was grateful that it was over quickly and relatively painlessly.
Lastly, the pills I started as a child are now invaluable, taking the place of my thyroid entirely. The dose skyrocketed and is still adjusted every few months as my doctor attempts to find exactly the right number, waiting to see if I react adversely to each increase. The goal is to keep the cancer at bay and my hormones functioning. I will never be able to stop taking the tiny pill, and it has become as much a part of my routine as eating and drinking.
Getting through these treatments, especially surgery, was hard. But it was the people I had with me through the entire journey, from those a short drive away to the ones across the country, that made the experience not only bearable, but livable. They texted me with random jokes and check-ins, took me out to lunch, and asked thoughtful questions about my surgery and treatment. They acknowledged my limitations in what I could do with them by helping me find alternatives so that I wouldn’t feel isolated because of illness. They sent me cards or small gifts just because. They were there for me when I needed them, and more importantly, when I didn’t.
When I reflect over the past year I still have trouble processing it. I was told over and over again how strong I was, but there were many times that I felt anything but. I was often a few moments away from crumbling inside, retreating into a shell until I found the cure for the pain I was facing. I had trouble explaining the struggle to others-–I didn’t know how to put it into words without sounding like a frightened, paranoid child. After all, my cancer had never been deadly. My doctors assured me from the moment of my diagnosis that I would not lose my life.
And yet, despite that comfort, nearly everything changed in a way I could not have foreseen. I unwittingly took on an illness that would never be entirely cured. I lost an organ. I became the constant recipient of concerned or curious stares. And most of all, I took on a new form of isolation, one that can only be bestowed by illness. Despite this internal struggle, I still felt guilt for feeling the way I did, for allowing myself to become so upset when I knew that I would soon be cured, while others would not. It took a long time to reconcile those feelings.
It’s been nearly eight months since my diagnosis and I am tentatively cancer free. I have to return regularly for tests, but for the first time in months, I am not worried. Everyday I feel a bit better, and some days I almost feel like I never had cancer at all. I am back to being me, to writing and travelling where I can. But I can’t deny that I’ve been definitively changed by three little words.
Photo by Meaghan Morrison