girl with the good kind of cancer

National Young Adult Cancer Awareness Week isn’t something I expected to care so much about. Sure, we all feel terrible about anyone who gets cancer, young or old – but to many of us another “awareness” week is just that: awareness that somebody else, not us, is out there suffering from something terrible that we can’t imagine. At least, that is, until it happens to you. But we’re young so we don’t “get it” — we aren’t going to get a terminal illness. We have our whole lives ahead of us! Don’t we?

I found a lump in my neck at the end of May. At one of the many appointments to try to figure out why a 27 year old would suddenly develop a tumor, I remember my mom being there and I looked over at her and said, “I know it’s something bad, Mom. My body just knows something is wrong.” This was after weeks – months, even – of fatigue, brain fog, depression, sore throats, and general malaise. One person in my life even commented, “Janna, you just aren’t the person I remember – even compared to three months ago.” My only explanation at the time was that I didn’t know what was wrong and that I obviously must be crazy. I’m 27. It can’t be cancer.

When the words were spoken to me, I was at my ENT surgeon’s office. “Do you know why you’re here?” He asked me. My reply was brief considering I was summarizing the countless appointments from the last few weeks. “Yes. There’s a mass on my thyroid and the only way to find out what it is would be to have my thyroid removed because it’s possibly cancer.”

I can still picture my surgeon’s old experienced eyes, sad as they peered into my bright, inexperienced ones. I can feel his timeworn fingers patting the summer-tanned skin of my forearm and the tone of his voice as he said six words that changed my young life. “Oh no, Janna. It IS cancer.” I’m not sure I heard anything else he said. My mind kept racing with thoughts: “I KNEW it. I’m NOT crazy. There IS an explanation for the way I’ve been feeling.” It’s weird to think that someone would be relieved to hear those words. I’m not sure if relief was what I was feeling, but rather validation – that finally there was an explanation for my downhill slide.

I don’t remember much of my conversations or actions after that except, “wait a second… I’m 27, this can’t be real.” Surgery came and went. An appointment with oncology came and went. Radioactive Iodine treatment, nearly in conjunction with my 28th birthday, came and went. Radiation came next, by far being the scariest and most isolating part of everything. One of the most nightmarish events was early on, when I spent between 30 minutes and an hour (I honestly can’t remember) trapped in my radiation mask bolted and strapped down to the table; the computer which runs the machine which distributes the cancer-killing radiation beam had frozen. “Hang on, Janna. We have to restart the computers,” one of my radiation therapists had said over the intercom. I gave a thumbs up from one of my hands strapped down to the table. I tried to open my eyes and smile in my snug radiation mask, knowing the cameras were on me so they could monitor me from outside the room. “Hang in there Janna. You’re doing great,” one of my other radiation therapists said to me.

All through it, those words from the radiation therapists, who were near my age, stayed with me: “Hang on Janna.” “Hang in there Janna, you’re doing great.” I never once thought it wasn’t worth it. I was young! I would beat this! I knew, or rather hoped, that I would come out on the other side and find meaning or a reason that I suffered through it. That I would “make my mess a message.” So I told myself to keep going. Take one step at a time. The fun, sweet, young radiation therapists kept my spirits up. They assured me that it would all be over soon and I could get back to the things a young person should be doing — building relationships, going to happy hours with their friends, taking road trips, planning their future. 

But I don’t think it’ll ever truly be over. I’ve changed too much. Cancer dies, but it doesn’t go away. The surgery, iodine treatment, and radiation could’ve killed the cells but cancer isn’t gone from my mind. I spend a lot of time wondering if cancer has ruined any chance I had at a normal, stable life. I quickly shake those thoughts from my mind, but I can’t even tell you how many times a day “cancer” enters my thoughts. I’m actually not sure it ever leaves. I’ve been assured time and time again that once you’re a year, two years, four years out, that you stop thinking about it every day. It instead becomes a less frequent thought when appointments come up or you have a new pain and wonder “what if?”

For now, though, it’s still fresh. And here’s my unpopular opinion: people my age can’t comprehend what I’ve been through or why the mental anguish of cancer (even “the good kind” like I have) is extremely difficult to overcome. I’ve heard things ranging from, “you’re doing great” and “it’s awesome you can still laugh through all of this” (from my radiation therapists) to “just be happy you’re alive” and “I’ve never seen someone with such a negative attitude” (from my peers). Those remarks, among many others, helped me realize that very few could truly understand. They could care, and they could be there for me, but there were just some things I could never say out loud to somebody who hadn’t been through it. It took me a very long time to get over this (and I am still working on it).

The silver lining is that things are starting to make sense now. Young adults face entirely different challenges than children or older adults, and we must be treated with respect to those. The cancer clinic hired a full time coordinator for young adult cancer patient services. She started a support group, where I’ve met wonderful people my age — many of whom have dealt with MUCH more than I have, but say and think the same terrible, sad, yet sometimes alarmingly profound things that I do. I was asked to be on an advisory council for the cancer center, I think in part because I am willing to say the things that nobody else will. I am willing to express the unpopular, and sometimes negative, remarks that need to be said – because I know that so many other young cancer patients like me are thinking it and need something to change.

So now I know it was worth it. The treatment, the anguish, the misery that I felt on a daily basis (physically and mentally) has a meaning. That meaning is why National Young Adult Cancer Week is so important to me. Because there are, at a minimum, 70,000 other people my age being diagnosed with cancer and our survival rates aren’t improving. Many of us lose the opportunity to have children or a stable financial situation because of our diagnosis. We are often diagnosed in advanced stages, resulting in more severe treatment and side effects – and a higher prognosis of dying (something that NOBODY wants to talk about). Our oncologists, surgeons, and primary care doctors don’t know how to treat us because our physiology is unique, or “they’ve never seen someone so young with this type of cancer” (that’s a direct quote from one of my doctors).

Young Adult Cancer Awareness matters. Through all I’ve been through, I know now there was a meaning: to make things better for anyone who suffers through this. You aren’t alone and things are changing. This is my vow to you, fellow YA cancer sufferers: I’m here for you. I’ll advocate for you. Together we can make things better.  

Tags: cancer, radiation, thyca, Thyroid cancer, young adult cancer