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.
It was only a matter of time before my low immune system took a hit. This week, it is in the form of the common cold. Most people with a common cold feel pretty generally crappy for a few days. Blow their nose a lot. Maybe have a cough, headache, sore throat. But having a cold after what my neck has been through the past 10 months is nothing like what I remember my BC (before cancer) colds being like.
The common cold had me ending up in the urgent care with my throat feeling as if it was swollen shut and my chronic cough (radiation caused damage my laryngeal nerve — which is the thing that controls your cough reflex, put simply) causing wheeziness and an inability to get a deep breath. To quote the doctor, “radiation does so much damage to your system, so don’t be surprised if every time you get a cold or sore throat, it will get this bad.” Not really something I wanted to hear, and I hope she is wrong.
I sometimes wonder if the treatment was worth it. I mean, do I want cancer growing in my body? Fuck no. But knowing what I know now, the long term effect it is having on my life and my health, I think I may have not just jumped right into it. I may have asked for more specifics about my treatment. I may have even asked if there was any way in the world that I wouldn’t have to go through radiation. But what’s done is done, and it did it’s job, and I am (hopefully) remaining cancer-free now.
Someone once said to me that the treatment for cancer is worse than the cancer itself, and I’m beginning to think that’s the truth.
When I was about halfway through my radiation, I came across a quote that said, “Some days, you will be amazed at your own strength.” That quote really resonated with me at the time. I got up every day, forced liquids down my throat despite the unbearable pain, drove myself to radiation though I wasn’t sure I should be driving, walked myself up the three flights of stairs to my apartment even when I had to stop every few steps to sit down, kept choking down the disgusting strawberry-flavored protein drink and forced myself to keep drinking even when I threw it up, successfully avoided getting a feeding tube put in (which I had been forewarned the last two patients in my situation had done), and completed my coursework on time (and even excelled) when I could barely keep my head up and my eyes open. So when I saw that quote, I thought, “wow – I really am strong. I can do this. I never thought I’d be strong enough to handle this, but here I am – almost done. Keep going, Janna. One step at a time. The only way out is through.”
But today, I’m dealing with that quote’s evil stepsister. The voice in my head that says, “Some days, you should be astonished at just how sick you feel.” On these days, the act of waking up hurts. The pain begins as soon as my eyes open, at times so bad that I can’t even get a deep breath. My throat, constantly irritated, is rough with phlegm that all the coughing in the world can’t dislodge. The scar tissue from surgery and radiation, which covers the entire expanse of my neck, moves stiffly and achingly as I swallow. I feel electric zaps shoot down my spine and through my arms as I bend down to put my shoes on. The fatigue might be the worst part, though. The deep, paralyzing aching across my whole body that whispers, “please don’t make us get up today, Janna. Haven’t we been through enough? We are so tired. Can’t we have just one more day to rest?”
On days like this, I don’t know what to do. I get irrationally frustrated with anyone who tells me, “you’ve had worse pain, you can handle this” or “I know how it feels to be tired.” I want to scream and say, “YOU DON’T KNOW HOW IT FEELS.” Even though that’s not true – people do know how it feels and many people have dealt with worse. But that doesn’t make my suffering feel any less real to me. Is the pain and fatigue anything compared to how I was feeling just a few months ago? No, it does not compare to that level. But in the past month, I’d gotten to a “new normal” of still feeling fatigue and pain but on a tolerable level. I’d let my mind finally breathe a sigh of relief because maybe, just maybe, it was starting to improve. Never would I be the same person I was pre-cancer, but at least I felt as if I could function. But this new tiredness, this new aching and pain…it’s really hard, and I don’t know how to deal.
I’ve got a scan coming up – if my oncologist’s office ever calls me back – and an endocrinology appointment coming up too, if they ever decide to call me back as well. At times it seems I’m the only one concerned with my health, which is a far cry from six months ago when I was monitored daily.
For now, though, I’m going to try to get back to that place – the one where I knew I had to keep going because there were things I wanted to accomplish, people I wanted to see, and battles to keep fighting. I have to remember that at times my own strength will amaze me, and just take it one step at a time.
The internet is on FIRE this week with great things for young adult cancer patients and survivors. There was the beautifully written “fuck you for telling me to be positive” article and the equally awesome, “stop expecting so much from cancer patients” post. I also had the chance to connect with some fabulous and brave young adult cancer survivors. When I hear others’ stories I think to myself, “wow, maybe I DID have it easy and I should be thankful.” But you know what? Other YA cancer people don’t see it that way. They think it fucking sucks I had to go through it at all. They are curious and ask questions about long-term effects of radiation, my prognosis, and want to know how I’m feeling — how I’m REALLY feeling. All of this because they knows what it’s like to be diagnosed with cancer as a young person and live with its effects, and even though their experiences might have been a thousand times more painful, expensive, and daunting than mine, things like that don’t matter in the young adult cancer community. We don’t look at each other and say, “I had it worse than you” or “you have no idea what it’s like to have _____.” This extends to other young adults suffering from chronic illness outside of cancer. It’s not about who has cancer vs. lyme disease vs. chronic fatigue syndrome vs. depression vs. hypothyroidism vs. diabetes vs. Crohn’s Disease (the list can go on, and often these things can be co-occuring, such as cancer and depression). Instead, it’s about making each other feel comfortable to talk about how shitty it is and not have to put on a positive attitude for the rest of the world.
The “you just need to be more positive” comments have GOT to stop. To me, it seems like other people want cancer patients to be positive because it makes things easier for THEM. It’s a selfish request – “Janna, can’t you just be positive? You’ll get better that way!” Translates to, “Janna, your negativity makes me uncomfortable and I don’t know how to deal with it.” I’m sorry I can’t be everyone’s perfect version of a cancer patient. I can’t wave my teal, pink, and blue thyroid cancer ribbon and be happy this happened to me.
For some, being angry and negative has probably saved their life.
Having a negative attitude doesn’t prolong cancer any more than having a positive attitude will cure or prevent cancer. It just makes others more comfortable. But you know what? I’M not comfortable right now. I’m not comfortable with having cancer, or with the pain, or with the mental anguish. So why should I do anything to make it easier for EVERYONE ELSE? I’m going to do what works for me and makes me feel better. If everyone else doesn’t like it, they don’t need to be in my life.
I’ll leave everyone with a comment from the first article.
“Don’t fucking tell someone to be positive. Be there for them. Because the truth is, we don’t tell people to be positive to make them feel better. We tell people dealing with cancer and other devastating diseases that they should be positive so that we can feel better, like we’ve done our good deed, without actually doing anything to help. We tell them to be positive about it, then we go about our lives feeling like we did something good. But unless you’re there to help clean up, to provide a shoulder when they’re too weak to stand up, to just hold their hand or hug them when they need it, you haven’t done a goddamn thing.“
I came across a new website tonight that I hadn’t visited before. I am so happy to have found it and wish I would’ve seen it sooner. It is a great resource for anyone looking for information on Thyroid Cancer, particularly those of us who are fighting it!
- “For reasons that are not quite clear, the incidence of thyroid cancer in women is rising faster than any other cancer in the United States.”
- “While most patients have a very small risk of dying from thyroid cancer, the risk of recurrence can be as high as 30% depending on the specifics of the individual tumor and patient.”
Thyroid Cancer is just recently becoming more prevalent. There is not nearly as much research done on this type of cancer, nor do we even know the full effects of it on women under the age of 50 — because there has not yet been a large enough sample size for clinical testing. Isn’t that scary? 5 years from now, we might find out that radioactive iodine treatment on women under 30 creates infertility; it may cause further cancer (like in the salivary glands). We just don’t know.
Today (Monday, November 4) is my last radiation treatment — hopefully ever.
Some may find this surprising, but I actually have mixed feelings about it ending. On the one hand, it has been a very rough process involving discomfort, pain, tears, stress, and an overwhelming sense of uncertainty. But on the other hand…everyone at the cancer clinic just gets me. They know the thoughts I have, the progression of my burns, my inability to even swallow water, the slow loss of my voice — but aside from that, they also know about my niece and nephews, about my classes and career goals; they know my sense of humor and know I will laugh at (sometimes) offensive jokes; they know I am obsessed with crushed ice, diet Pepsi, and coffee; most importantly, they know that cancer has changed my life indefinitely and have helped me to feel okay about that.
So this is where the sense of mixed feelings comes in. While I would do anything to not have ever had to go through this, I am scared not to spend almost an hour a day, five days a week with my nurse, doctor, and radiation therapists. They’ve truly been my anchors through this — keeping me steady and afloat through everything. I will miss being greeted by the receptionists, who learned my name the very first day I walked in and haven’t forgotten it since. I will even miss seeing the annoying older woman who ALWAYS wanted to chat and ask how I was. Even though it was frustrating because I prefer to be left alone, I have to admit now that it felt nice to know this woman — a stranger whose only bond to me was a cancer diagnosis — was concerned about my well-being (and I am concerned about hers.)
I also just cannot wrap my mind around this all being over. In truth it will never be “over” because I will forever have the scar and mental reminder that cancer is there, lurking, and can come back at any time. But for the past five or six months it’s been step by step to get rid of the cancer and now — there’s no more steps. It’s done, HOPEFULLY gone, and I’m just supposed to move on.
Moving on means getting back to real life. Friends who I’ve neglected because there’s an awkwardness following a cancer diagnosis; going home to visit my family because I will finally have enough energy to drive myself there; pulling up my grades because I can finally focus on the content in front of me; and potentially reentering a workforce which I left bitterly six months ago.
Cancer has changed me, and it’s strange to think I’m supposed to just go back to normal after this. I can’t wait to be able to say I’m cancer free, but I never want to forget the journey I took to get there.
Well, here we go…last day of radiation! :)
It can be hard to relate to your friends who are stressing out about bad dates or workplace politics, while you are wondering how to pay for treatment, trying to preserve your fertility, and confronting your mortality for the first time.
Miki Moskowitz, medial and clinical psychology doctoral candidate