“It’s November of 2019. Just 3 months before my wedding. Final planning and holiday travel are just around the corner, so I’m tired and stressed and assume the swollen lymph nodes under my chin area indicate my body is likely fighting something. But when they don’t go down after about a week, I start to get a little worried. I go to my primary care doctor, who palpates my neck and assures me nothing feels out of the ordinary or concerning. I’m hesitant to take this quick, perfunctory assessment as absolute truth, and I guess my face shows it because the next thing out of her mouth is, ‘I mean… I can order an ultrasound for you if you want—for peace of mind.’
I retract, feeling a little shy and embarrassed I’m seeming to make a bigger deal of something she so clearly thinks is nothing. I almost say, ‘No, you know what? I’m sure you’re right. I’m sure it’s nothing.’ But at the last second, my mouth forms the words, ‘Okay, sure. Why not? Order the ultrasound.’
A phone call from my doctor: ‘So, your lymph nodes look normal. However, there are two small nodules on your thyroid. Don’t worry—thyroid nodules are common, most are benign.’
‘But how can we be sure? Is there another test we could do?’
‘At the moment, no. They are very small… too small to biopsy. We will monitor them once a year to see if they grow or change at all. Like I said, I wouldn’t worry about this.’
So, in a very un-Kyla-like way, I don’t. I somehow successfully put it out of my head, go about my life, get married, continue working, take trips, and go on a month-long honeymoon all over Europe. By the time we get back from the other side of the world, it is January of 2020 and my inaugural yearly ultrasound is already 2 months overdue. Another phone call from another doctor, this time one I’d never met: ‘Hi, Kyla. So, one of the nodules has almost doubled in size from the last scan and has concerning characteristics. I’m going to order a biopsy.’ Yet another phone call. 2 days after the biopsy and 4 days before my 1-year wedding anniversary: ‘So, as I thought, it’s cancer…’
An echoey, internal *kathunk* as my heart drops into my stomach and my inner voice chimes in with a deep-sounding ‘…f*ck.’ At a stoplight, frantically trying to get a hold of my husband so he can join the call and hear this news with me from someone who knows how to explain it so I won’t have to try to later. The next sentence he utters is one that will prove to haunt me persistently. One that will continue to make me feel guilty, invalidated, and unseen. One I will learn is something insensitively told to thyroid cancer patients time and time again: ‘…but you’re lucky. It’s the good cancer.’ I don’t feel lucky. The next month is dizzying. The phone calls, the many appointments, the differing surgical opinions about a decision ultimately in my hands, the tears, the vulnerability, the anxiety, the mustering of courage, then COVID.
Lockdown. And suddenly, the biggest and scariest thing I have ever faced becomes insignificant to everyone else. Check-ins become sparse, if at all. I crave the community and support system I need now more than ever. But many friends move away, many become swept up in their own lives, and many are multiplying. As they do amongst peers when you’re in your thirties, babies are popping up left and right. I speak to friends and ask how their doctor’s appointments are going. They giddily show photos of ultrasounds and give exciting updates about how the pregnancy is moving along and share their various plans for their new expanding family. And then they ask how my doctor’s appointments are going. It all feels so unfair. It’s not that I want to be pregnant or having babies at this point in my life—I don’t. I’m not there yet. But this forced side-by-side comparison the universe keeps repeatedly shoving in my face feels like punch after punch in the gut.
I mean, here is this thing—this huge milestone adventure these friends are choosing to embark on will change their lives forever, and they are SO thrilled about it. And then here is my thing—this huge milestone adventure I am NOT choosing to embark on will change my life forever and I am NOT thrilled about. It’s like I’m living in the Upside Down. I feel isolated and alone in all ways.
So, what’s a girl to do with all these feelings, a cancer diagnosis, and a global pandemic? So far, I’ve unsuccessfully tried to force my way into a decision about what treatment is best. And now, is it even safe to be in public, let alone undergo surgery in a hospital? Is it safe for my parents to fly out to help with recovery or for me to even see anyone but my husband? I decide the answer to all of this is no. For better or worse, I can’t add more stress and fear into the mix.
And fortunately, papillary thyroid cancer is slow-growing and I am still considered low risk. I use the first few months of lockdown in my apartment as my own little wellness center. I take on an Ayurveda regimen full of prescribed herbs, teas, tonics, dietary restrictions, and instructions—making all my meals fresh and from scratch. In between my shifts in the kitchen, I move upstairs for 45 minutes of chanting twice daily, plus yoga and meditation. I journal a lot and find a new therapist and work through a bunch of sh*t. In a way, it’s a blessing. Had I gone directly into surgery after that first month, I would have been obscenely tense, anxious, and fearful, which I believe would have impacted my healing and recovery. Cancer is such a powerless reality, and so I use those first few months to work on regaining some power. And finally, on June 11th, 2020, I say goodbye to my thyroid.
A total thyroidectomy and central-neck dissection later, I wake up to a new reality. My recently constructed permanent necklace marks the ending of a 33-year ‘pre-cancer’ chapter and the beginning of a new one that will never close. I also wake up to the surgeon reassuring me, ‘Your vocal cords and nerves were monitored during surgery and were able to be stimulated. Nothing was injured. Your voice will be fine.’ As a professional actor, I’m beyond relieved to hear this. I’m a little raspy in this moment, but he assures me it was from intubation and shouldn’t last long. So, it comes as a huge shock the next day when I wake up and can’t make a sound. And then again the next day. And the next. A follow-up visit with my doctor and a vocal cord endoscopy to see what is going on. ‘Oh yeah. Your vocal cord isn’t moving.’
‘At all?’
‘Nope. It’s paralyzed.’
‘But why? How? You said my cords were able to be stimulated and were fine.’ “
‘Not sure why. Maybe it’s a bruised nerve.’
‘Will it come back? How long will take?’
‘Don’t know. And don’t know.’ So off I go, with more confusion, fear, and uncertainty than I had before. 6 weeks without a voice not knowing if it will ever come back feels like 3 years. This new curveball takes all my attention and the whole ‘cancer thing’ takes a back seat. But eventually, Ursula decides to regift what she had stolen. In regard to the whole ‘cancer thing’ that got temporarily back-burnered, many people assume, ‘They removed your thyroid, so you must be cancer-free now, right?’ I wish it was this simple or clear. At this point in time, my surgery was almost a year ago, and I’ve had ups and downs and curveballs galore. From my vocal cord paralysis to finding out my tumor markers aren’t reliable due to previously unknown antibodies, to some erratic blood work, intense diets, scan regimens, etc., I’ve been handed mysteries, uncertainties, and non-answers at every turn.
One of the biggest lessons that seems to be presenting itself to me is GET COMFORTABLE IN THE UNCOMFORTABLE. Presently, I don’t know what’s next. I’m still in speech therapy to try to optimize vocalizing with one working cord. Old lefty is still paralyzed and (even though the laryngologist doesn’t share this optimism) I’m secretly hoping he will eventually wake back up and remember his job. I don’t know if I’ll have to do more treatment or if the cancer is still there or if it will come back.
What I do know is the pill I take every day—the one that tricks my body into thinking I still have a thyroid—reminds me of my cancer. It reminds me of my life-long figurative bindings that tie me to doctors, testing, and Big Pharma. It reminds me no matter how in touch I continue to be with my body, there are things I can’t tune into and can’t green juice my way out of. And it reminds me as much as I want to believe I have power and autonomy over my own life, most things are out of my control.
For now, I live my life in 3-month increments. And every 3 months, when my bloodwork and scans are coming up, I anxiously wonder, ‘Will I get a hall pass? Will things look clear and clean enough for me to not have to worry until another three months from now? Or will they see something questionable?’ It feels to me like being on a long leash. And again, I’m working on getting comfortable with this. Or at least surrendering to it. My first thought after my initial diagnosis that still haunts me is, ‘What if I had said no to the first ultrasound?’ What if I had said to my primary care doctor, ‘You know what? You’re probably right… those swollen glands will probably go down on their own soon…’ (which they did, by the way) ‘… never mind.’
How long would it have been until I found out? Would I ever have found out? Would I have had symptoms eventually? Would it have gotten worse? These questions will forever go unanswered. But what I have learned in so many frustrating ways over and over again throughout the last period of time is YOU HAVE TO BE YOUR OWN ADVOCATE. I’m sure I’ll continue to learn this over and over still. Know your body. Listen to your gut. If something doesn’t feel right or you don’t get what you need from the doctor, keep searching until you find someone who will listen. Keep tuning in. Keep speaking up. Your life depends on it. P.S.—no cancer is good cancer.”
This story was submitted to Love What Matters by Kyla Schoer of Los Angeles, California. You can follow her journey on Instagram and her podcast. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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