“I’m sorry, but you have cancer.”
With those six jarring words, my life was suddenly divided into two stark contrasts: B.C. (before cancer) and A.C. (after cancer). While on the phone with my otolaryngologist, who had just operated on me the day before, I fumbled for a piece of paper and a pen to write down the diagnosis. Adenoid Cystic Carcinoma. I remember asking him to spell it. “A-D-E-N-O-I-D-C-Y-S-T-I-C.” A type of salivary gland cancer seemingly arising from my sinus cavity.
My B.C. life had been relatively uneventful. I grew up in a small town southwest of Indianapolis and attended Butler University for my undergraduate degree where I met my future husband while playing collegiate golf. We managed long-distance during my two-year stint down south at the University of South Carolina obtaining my Master of Speech Pathology degree. I moved back home to accept a job as a Speech-Language Pathologist (SLP) at Franciscan Health Indianapolis, and we had said “I do” just nine months before that lovely phone call.
Professionally, I had just accepted a full-time position within Franciscan Health (I was previously working PRN or “as needed” but essentially full-time hours) with the added benefit of, well, benefits. I remember inquiring about the SLP department’s involvement within the facility’s cancer center during my interview. Head-and-neck cancer had always been an interest, developing into a passion, of mine. Little did I know…
In the winter of 2016, a few months after our wedding, my husband began nudging me awake in the middle of the night. “You’re snoring.” My mouth was dry, sticky, and had clearly been open. Snoring had never been an issue before, at least to the point of waking my husband up, so why was it an issue now? I began feeling “stuffy” during the day and worse at night. Chalking it up to working in a hospital during the winter months, I largely ignored it.
Winter transitioned to spring and I attended a wedding of one of my dear graduate school friends in Charleston, South Carolina. One of our first stops was at a Winn-Dixie to purchase nasal spray. I’d never had issues with allergies before but it was the south and I had moved away, so maybe I was more susceptible now? The nasal spray did nothing, of course.
The now deemed “nose issues” continued, as I now knew I was not actually ill and the issue seemed primarily concentrated in my right nasal passage. I had noticed now that I could no longer physically move air through my right nostril. I felt some pressure, like a mucous bubble that just wouldn’t pass. One morning before work I blew my nose so hard to the point of bleeding. While it seems late to me (but actually not that long when I talk to HNC patients of my own who were experiencing their own symptoms), I finally had the idea to ask a co-worker to scope me in our office as we are fortunate to have our own stroboscopy unit. “Maybe I have a deviated septum or something” I told her. “But I don’t remember any trauma?”
One day over lunch I sat in our strobe chair while my co-worker prepared to thread a small camera through my nostril. Except she didn’t get very far. Staring back at her (and a co-worker who had come to watch), was a rather friendly looking mass…as far as masses go. I recall very clearly one of them saying “Well that’s not supposed to be there!”
We took a few pictures (I even posted one on social media, joking about what SLPs do over the lunch hour) and I made a mental note to make an appointment with an ENT, or otolaryngologist. All three of us were fairly sure it was simply a large polyp. I mean, like I said, it looked friendly enough? I was 26, my whole life ahead of me, of course it’s nothing. It’s supposed to be nothing.
I dragged my feet calling an ENT office (because who likes making phone calls these days? Can’t I just email them or use some web portal?) and eventually took the first available new patient consult appointment. The ENT consult itself was positive; while seeming benign enough he wasn’t sure exactly what it was either and encouraged me to schedule surgery to get it removed. I scheduled and attended said surgery during which samples were sent to the lab, which brings me to that absolutely numbing call the next day while recovering at home. “I mean, I’ll be ok, right?” I remember asking. “I mean, I do treatment, and then I’m ok, right?”
“This is a fluke. This is a really rare disease. And where yours is located is even rarer. It grows along nerves. It likes to come back. I’m sorry.”
My A.C. (or ACC) life now included phone call after phone call (I’ve only just stopped answering what end up being crank phone calls out of habit that it may be some physician office or insurance liaison), scheduling appointments, and getting together a game plan. My ENT had consulted another otolaryngologist within his practice, thought largely as the best in the state. First off was a PET/CT scan to ensure that the cancer had not advanced to anywhere else in my body. “This is the best news you’ll get all day” my new ENT said as he told me of my clear (besides the already known HNC) scan. Clear PET meant moving ahead with surgery to obtain what are known as “negative margins” or finding negative tissue all around the original tumor site. This is where some of my husband’s memories begin to assist, as while I lay still zonked in the post-procedure unit, both of my ENTs were “word-vomiting” (as my husband puts it) to my anxious family in the waiting room. No, the surgery did not go as they hoped. No, they did not find negative margins. Yes, I’d probably need more surgery, and likely much more invasive than the relatively routine endoscopic surgery performed that day.
After some discussion, we opted for the next surgical step. A craniotomy with skull base resection, as during my previous surgery my ENTs were essentially knocking on the door to my brain cavity with continued positive margins. During this procedure, a neurosurgeon would open my skull from ear to ear and above my eyebrows, basically like a Mr. Potato Head flap. While gently moving the front of brain out of the way, the neurosurgeon would resect and reconstruct what was needed from above while my ENT would resect what was needed from below.
This surgery went more smoothly with essentially negative margins found except for a miniscule area near my right eye. I only remember bits and pieces from that hospital stay which involved being in the neuro ICU for a few nights then being moved to a regular floor for a few more. I remember immediately upon waking up from surgery I vomited, which created a pressure in my skull unlike any other I have felt, after which I immediately thought “oh crap! I’ve ruined it!” (‘it’ being the surgery I guess?). Despite working in a hospital, I don’t think I made a very good patient – I refused to eat, refused to work with physical therapy, and tried to turn off bed, chair, and IV alarms since I happened to possess those skills. Thanks to meds I remember essentially nothing. Except petting a therapy dog. Of course.
Next came the real fun: chemoradiation. Thirty-three infractions of daily radiation plus weekly chemotherapy. As I had already exhausted my pitiful PTO bank and short-term disability, I worked as much as possible throughout treatment. Plus, I needed something to distract myself. I got up, drove to work, saw patients, then left in the afternoon to be strapped to a table left to my thoughts. Towards the end of treatment that routine turned into work a bit, go home and take a nap, and go to treatment.
During my second week of treatment, I started to notice effects beyond dry mouth. I remember my husband picking up Steak N’ Shake on his way home from work for us. A Frisco Melt. My favorite. “Hey” I said to my husband after a few bites, “they forgot to put frisco sauce on this!” I opened up the sandwich to find a healthy dose of frisco sauce seemingly mocking me. Here we go…I thought to myself.
My taste rapidly deteriorated, as did my will. My husband and I are self-determined “foodies” – we live downtown and love trying new restaurants. Now, I couldn’t distinguish between a steak and wet cardboard in my mouth. As I’ve worked with patients going through treatment since, I find either they don’t really care, or it bothers them a whole lot. I fell into the “it bothers me a whole lot” category. My mouth was dry as a bone. It hurt. I essentially lived off of Ensure shakes and lost a significant amount of weight with the constant threat of a feeding tube. I swore I’d never take another bite of food for granted again. My radiation schedule happened to fall on two important dates, my birthday as well as our first anniversary. We had originally planned a trip to the Pacific Northwest with plans to eat, drink, and hike our way around Portland and Seattle. We cancelled our flight reservations and instead drove up to Indiana Dunes for the weekend where I cried trying to eat a Custard’s vanilla ice cream cone.
I am well aware that I am luckier than most as my difficulty with food was acute and limited to the weeks during and following treatment. However, it was quite vexing to realize just how much of our lives were centered around eating. During treatment two important milestones passed by during which our usual activity of going out to eat was just not an option. We had splurged on a nice bottle of wine during our honeymoon to California that we had planned to open on our first anniversary. Now I worried I’d never be able to taste it. My husband encouraging me to eat resulted in a fair amount of friction, as I usually fired back “you try eating something that tastes like nothing and see how you like it!”
Now, I live in the A.C.T. or “after cancer treatment” era, the transition to which was a heck of a lot harder than I thought it would be. Once I finished treatment and things essentially returned to normal, I found myself being much more anxious, ruminating on negative thoughts, needing to fill every second of my time with something lest I be left with my own mind. My fellow cancer fighter and personal idol Gabe Grunewald (American professional middle-distance runner who had also been diagnosed with ACC ten years before), had suffered a major blow. Not only was her cancer back, it had spread to her liver only to return after surgery and wasn’t responding to multiple treatment modalities. I had a difficult time separating myself from Gabe’s experiences.
The moment I was given the diagnosis of ACC, I was immediately thrust into “fight or flight” mode. I had fought through three surgeries, one of them major, and endured six and a half weeks of grueling chemoradiation. Now I was just, done. As far as we knew, the cancer was gone (with the exception of a few additional biopsy scares). Now what? What was there to fight? I quickly found that what was left to fight was the fear, the anxiety, the mentally taxing impact cancer had and was still having on my mind. The fear of recurrence, which was and still is a very valid fear particularly with ACC.
One of the best things my medical and radiation oncologists did (among many great things) was refer me to a psychiatrist, who managed medications and also referred me to a psychologist whose primary interest was the concept of “transition to surveillance” (or survivorship) within the cancer population – basically, exactly what I was struggling with. Working with this psychologist allowed me to focus on my personal, identified values, and not allow cancer to be so “in my face” as it was during my treatment. I was (and still am) so fearful of recurrence but now that fear is dulled…enough to function and enjoy my life without constantly ruminating on my own death. I highly recommend finding someone in the behavioral health community who has extensive experience with cancer patients.
I would be remiss if I didn’t return back to someone I alluded to one point during this story. During my routine Googling of ACC, I discovered Gabriele Anderson Grunewald (or “Gabe”), a woman just a few years older than me who had been diagnosed with ACC while running track at Minnesota. She had been cancer-free for 10 years (besides an unrelated diagnosis of thyroid cancer), only to have the “relatively indolent but relentless” cancer return in the midst of her professional running career.
I immediately could not get enough of Gabe. I worked hard to be “Brave Like Gabe”, which was the phrase her support community coined and eventually became the namesake of a non-profit organization created by Gabe and dedicated to rare cancer research and empowering cancer survivors through physical activity. It’s difficult to put in to words how much she inspired and continues to inspire me. I knew in late spring of this year that her race was coming to an end as various treatment options continued to fail; despite this, Gabe was still ever-present within her organization and attending cancer-related events, always with a brave smile on her face. The moment I saw her husband, Justin, post on Instagram regarding her passing on June 11th, 2019 at the age of 32, I felt like a friend, a mentor, a personal hero had died. In Justin’s posts since I have learned about their plan to live life in three-month increments. Make a plan for those three months, enjoy them, savor them, then get ready for the next three. Until they ran out of months and days.
I am going to close with a passage that still brings tears to my eyes. It is a passage that was written by Tim Leyden of Sports Illustrated at the time, who profiled Gabe twice during her fight with ACC. She is my guidebook for both living as a survivor and my guidebook should my cancer return. She is why I continue to work every day with patients who continue to deal with dysphagia related to head-and-neck cancer, whether during treatment or in the years following. She is why I have patients look me in the eye when they are so miserable during radiation that they don’t even want to lift up their heads. She is why I spend time in the exact place where I am constantly reminded of the existence of cancer itself.
“So understand this: Gabe spent the last years of her life fighting, living, running…. inspiring others… fully aware that she was not winning her own fight, but fighting ever harder just the same. That is something beyond bravery. Something beyond courage. Many of us live every day in denial of our own mortality, gently nudging its presence to the perimeter of our existence. Gabe’s mortality was in her grill, and she punched at it until she could no longer lift her arms.”
Leyden, Tim. (2019, June). ‘Brave like Gabe’: Remembering the runner who never gave up in the face of an unbeatable opponent. Retrieved from https://www.si.com/olympics/2019/06/11/gabe-grunewald-runner-cancer-battle-inspiration.
Brave Like Gabe website: https://bravelikegabe.org/
Written by: Julia Porter, MSP, CCC-SLP. You can contact Julia at firstname.lastname@example.org.