Special Edition: Surgery, Radiation, and Waylon Jennings
The story of my surgery, 33 radiation treatments, and some folksy mix-ups.
Okay folks. Here it is. After detailing the agony of waiting during the diagnosis phase, giving a shameless PSA for therapy and all the wonders it provides, dishing about a rather hilariously stressful pre-surgery bout with a chicken-wing obsessed Mauve-haired phlebotomist, and interviewing my sister and my folks about their experience being on the loved-one side of cancer, I am R-E-A-D-Y to share the story of my surgery and radiation treatment.
I decided that weaving in my Instagram posts documenting my cancer journey with my story would provide some helpful visual context. I only started being active on Instagram when I was diagnosed. Perhaps I was feeling very alone, despite having such a wonderful support system at home. I think a part of me was worried about fading away and not being remembered. As morbid as that sounds, it was one of the more rational feelings I had during that time.
To catch anyone who needs it up: I was twenty-seven years old when I was diagnosed with squamous cell carcinoma. I got married when I was 26 to the love of my life, my high school sweetheart. I had multiple tongue biopsies done between 2014–2017 due to the presence of precancerous cells on the underside of my tongue (dysplasia). My tongue became intensely sensitive to citrus and acid in the early fall of 2017. I decided to move-up a scheduled appointment with my ENT (ear, nose, and throat doctor called an otolaryngologist) in October. Got in to see him right away. Days later, while my parents had just left the country for the trip of a lifetime across Italy and Europe, I received the diagnosis. The big “C.”
So, once I was through the diagnosis, scans, and pre-surgery tests phase, I braced myself for the surgery on November 2nd, 2017. The morning of surgery, I wrote the following short entry in my diary:
This morning I have cancer.
This afternoon I will not.
Hooked up to monitors waiting for surgery.
I’m ready.
And if it reads like a mantra, it’s because I was repeating this first two lines over and over in my head since I woke up that day. My wife and parents were overly sweet the eve of surgery. I had had a productive and emotional session with my therapist earlier that day and I think they made me something I usually enjoy for dinner, though I can’t remember what because there were bigger things weighing on my mind.
They all encouraged me to get plenty of sleep and I was shooed to bed rather early. Getting to sleep was the difficult part, but I think my body (having also been present in therapy) decided to take a cue from the professional and just let my mind and heart get rest. I was exhausted and I slept hard. Heavy. Good thing, too, because I woke up in a fury. I felt angry. I felt vengeful. I felt like setting shit on fire. I woke up ready to do my part. Which really was to just sit there and take it. And own it. And not worry about my looks, or my neck, or my speech, or my tongue. Just keep my head down and take it, so that I could move on with my life. Moving on. Moving from cancer to no cancer. That was the mission.
The moment I remember most before my surgery is looking my surgical oncologist right in his beautiful blue eyes and telling him (with my eyes, of course), “don’t you fucking fuck this up!” And it could be the anesthesia starting to kick in at that exact moment, but I swear he nodded and looked at me like, “no worries, I’m a pro.” That’s the kind of guy he is. A little coy. Very cocky. But rightfully so. A young man, I’d guess late thirties, early forties max. Handsome guy. Direct, yet good bedside manner. Walked around like his shit didn’t stink and ya know…any other time he might’ve bugged me, but this was exactly the dude I wanted cutting into my neck and tongue.
The surgery went well. I woke up in the recovery room to see my dad and my wife’s smiling faces. First thing I did was grab a pen and paper and wrote rather sloppily, “did they get it all?” They reassured me that my surgeon got clean margins, and everything went well. After that, I remember being up in the inpatient hospital room with my family. They were arranging for my wife to get a pillow and blanket to stay with me overnight, which I didn’t even argue with. Overnight hospital stays are scary enough without missing a chunk of my tongue and feeling like hell. Plus, I couldn’t speak for at least a week after surgery, so all my communication had to be written or mind-melded by my interpreter (aka my wife).
That night was rough. I’m glad Em was there to stay with me. I had two different roommates in just 12 hours — lots of shuffling. The nurses were coming in every two hours to give me more medicine and check my vitals, so sleep was very touch-and-go. The next morning is a bit of a haze, but I remember vividly my surgical team telling me that I’d need to drink two big mugs of water before they’d discharge me. Mind, a sip of water was quite painful. Swallowing a mouthful at a time felt excruciating (but at the time, I didn’t have radiation mouth to compare this to). It was almost as if I had forgotten how to swallow. They removed enough of my tongue to make it feel like a detached limb I had no control over. My neck, which they cut into in order to remove 41 lymph nodes, was completely stiff and unyielding in my pursuit to swallow the damn water.
Despite the pain and new sensations in my head and neck area, I was determined to GTFO of the hospital and get home. Through tears, I drank as fast as I could. After that, the doctors changed the rules of the game (typical), and stated I must walk a lap around the floor on my own. So, I dragged my IV pole with one hand, clamped the moon-side of my gown together near my rear, and took my first step away from the bed on my own. Immediately I got worried, as though I was attempting a sobriety check I would not pass. My legs felt like jello, my mouth hurt, and I remembered the song from one of my favorite Christmas Claymation movies, Santa Claus is Comin’ to Town. “Put one foot in front of the other, and soon you’ll be walkin’ across the floor!” I had to really focus on that song and taking one step at a time, but pretty soon I had the rhythm and I was fueled by my family cheering me on like I was running a race.
I was proud that day. They agreed to discharge me. We were just waiting to have my IVs removed and get post-surgery instructions and supplies. There were two nurses in training (it was a teaching hospital) that came in to remove my IV and get me ready to leave. I was excited to be their guinea pig until they started some sort of Abbott & Costello foolery while trying to prepare just the tape and gauze for my IV sites. At first, I thought I was just high from all the pain killers they had me on, but these two kept getting little pieces of tape stuck on their medical gloves, and unable to remove the tape, they threw out at least 4 gloves total due to tape issues. The gentleman proceeded to pull my first IV out too fast, requiring me to hold it in place since they got their gloves stuck on the medical tape (again). They dropped a piece of sterile gauze they had set aside for the other IV site and they left the room to retrieve another piece of gauze. The first IV fiasco had me pale as a ghost, my heart was pounding, and apparently my eyes said it all. My wife calmly followed the two young nurses-in-training out of the hospital room, spoke very softly to them, then came back in and said the doctor would be in shortly to remove my other IV. Yep, she ‘Karen-ed’ them. But she did it for love.
We had to wait for the doctor to make it around to us for the simple IV removal, but it came soon enough. I smiled and waved at my nurses. I don’t remember the ride home. I just remember getting into the living room recliner. My mom, dad, and wife fluttering around me, adorning the side table with everything I could possibly need: whiteboard, medicine, water, phone charger, all the remotes, and tissues because I’m emotional and messy.
I remember being frustrated immediately by my inability to speak. I am, naturally, a very talkative person. I felt like my wings were clipped. But truthfully, speaking seemed so far off. It felt like my shoulders up to my nose were a huge balloon, ready to burst. My neck was very stiff, a constant ache from the removal of the lymph nodes. I could only take my medicine crushed up in applesauce. We tried pudding, but it was too thick to swallow. In fact, the applesauce slid down my throat when I tilted my head far enough back, so I didn’t have to really swallow at all.
I had a tube which drained my neck and lymph incision site into a medical bulb. I had a bunch of stitches on my tongue.
But I was cancer-free.
Unfortunately, the pathology on the tumor from my tongue, while it revealed clear margins (meaning no cancer on the edges of what was removed indicating all the cancer is gone), I had what’s called PNI. This stands for peri-neural invasion. Essentially, in the piece of tongue removed, cancerous cells were found in a section of one of my nerves. The unfortunate part of this is that the nerves act as a tunnel of sorts — to other parts of the body. This left us with a decision. We could hope that all the cancer was removed with the lymph nodes and tongue excision and simply monitor for anything irregular OR we could opt for radiation treatment to basically fry any small trace of cancer that was left or that traveled to another part of my upper body via the nerves. Radiation carries lifelong side effects, many of which were amplified for me as a) a young person hoping her prime is ahead of her still and b) as a theatre artist who spent years training in vocal performance. Xerostomia is the fancy medical term for dry mouth. I was really stuck on this and wrestled with the pros and cons of radiation versus no radiation. It would buy me peace of mind, yes, but there’s a chance it could all be unnecessary (in fact, there was and is no way to tell if radiation was necessary or utilized to kill any cancer; there’s a chance the cancer was already gone when we did radiation). Bilateral radiation would destroy my salivary glands. My removing saliva from the oral cavity, patients are much more susceptible to dental issues. Twenty years ago, head and neck radiation patients had to get their teeth removed to proceed with treatment. Luckily the technology has advanced enough for radiation oncologists to target affected areas while causing less damage to the teeth and healthy tissue in the mouth.
Being someone with anxiety, I made what I thought was the “safe” decision to proceed with radiation. To fry and kill off anything that could possibly be hiding out in my body, because I was convinced I couldn’t bear not knowing and being worried all the time. I think, for the most part, that was the right choice for me.
There was quite a bit of preparation to be done after I made the decision. First, I had to go see an oral surgeon for X-Rays and clearance for surgery. Essentially, he had to determine if any of my teeth needed to me removed or would need to be removed in the near future, and if so, take out any teeth prior to treatment. The reason for this is that removing teeth or doing serious dental work on teeth that have already been hit with radiation are at a very high risk for bleeding and infection due to the loss of salivary glands and affected bone tissue in the mouth. Luckily, he said my not-so-pearly-whites were good enough to hang on to forever and sent me on my merry way with a signed form. Next, I went to visit a prosthodontist. She was very nice, oddly efficient, and a bit intimidating. She gave me the low down on how treacherous dental care would be for me. Forever.
The main reason I went to see her is that she fitted me for this very sexy device that I would wear during radiation treatments. It basically kept my tongue pushed back and away from the area which would be most heavily treated and kept my lips (healthy tissues) pulled up and away from my gums. It was not comfortable to be fitted for the device, but the strawberry flavor for the impressions was tolerable and she gave me free tooth stuff so that was fine. Not as cool as a sucker or stickers, but it was fine.
I then had to be fitted for a scary mesh mask used for all my radiation treatments; it serves to keep your head and shoulders completely still so that once the radiation beams are lined up perfectly (talking mm or more precise here), the treatment hits the areas we suspect cancer could be, but not my healthy tissue as much. I say, “as much,” because radiation frucked all my shit up. It was relentless, cold, and mean-hearted. But still, technology saved me a lot of extra pain, so I’m grateful for the mask.
My start date for radiation was set for Tuesday December 26th and honestly, it kinda rained on my Christmas parade. Bit tough to let myself relax and enjoy the chaos of married Christmas. I call it married Christmas, because my wife and I endeavor on a 14 hour day of back and forth driving, short visits, multiple meals, lots of hugs and piggy back rides for nieces and nephews, then we usually hit a movie at the end of the night — just the two of us. I believe we saw the remake of Murder on the Orient Express that Christmas. I most recall holding her hand that day. In the car from one house to another. While walking into each house. While watching family open presents. And in the theater. We were some of the only people there. She held my hand tight that day. She kept me grounded. I was preparing for battle all over again and it make me nauseous to think about. She just kept holding my hand. And she’d give me the occasional wink to scratch the back of my neck to let me know that this sucks and she knows what tomorrow has to bring, but we’re here now with family and she’s got me.
The day after Christmas was not the normal, laze around in our pajamas and watch movies and eat cookies day. But a great battle ensued…told in pictures:
Funny anecdote: my music tastes and pump-up playlists varied throughout my 33 radiation treatments. I was going to get radiation 6 times a week, doing a double dose on Thursdays (one in the morning and one in the afternoon). Lots club music, lots of music for me to dance aggressively to in the car (I DO love car-dancing). My mom was usually the one driving me to treatments since her work schedule was more flexible than Em’s or my dad’s, and I’m fairly positive she enjoyed my “preparing for battle” jam sessions. She did NOT, however, find my playing of Imagine Dragon’s “Radioactive” funny or clever.
Anyhow, I really like this female folk trio called The Wailin’ Jennys. They cover a bunch of great music and make Tom Petty songs sound better than Tom Petty ever could. I grew up on folk and country music, so these folksy gals made me feel comforted and safe while on the way to and waiting for radiation treatments. I had been on a Sara Bareilles streak for a while, and the kind radiation techs got used to playing her music for me over the speakers during treatments. I was so thankful for music those days. They strap you down and snap the mask into place, and it’s so tight it would sometimes leave these dragon-scale looking prints on my forehead and cheeks. The music helped me slow my breathing and heart rate. It was easy to get panicked in the big scary room with the big scary mask and the tightness against my neck and head. So, on a particularly stressful day, I asked the radiation technicians if they would please play me some Wailin’ Jennys on Spotify to mix it up. I got the thumbs-up!
About 10 minutes later, after snapping me into place, adjusting the table I was strapped to up, then down, then forwards, then back the other way until it was just right, they headed out of the room and said they’d get the music playing when they started the machine.
I heard music click on over the speakers. I heard some twangy chords and closed my eyes, preparing to be cradled by the beautiful harmonies of the folk trio. It must have taken me a full minute to realize that what I was listening to was not, in fact, the Wailin’ Jennys, but rather, Waylon Jennings. VERY different artists. Very different.
I couldn’t help but chuckle to myself. A motionless chuckle vibrated through my body and I remember smiling beneath the mask, cracking my eyes just a bit to see the machine circle around and above my head, undoubtedly causing lifelong damage, but also giving this cowgirl some peace of mind and the best chance at a cancer-free future.
This photo journey doesn’t cover it all. One big concern during my radiation treatment is that I was losing a lot of weight very quickly, and not getting enough calories in. It got to the point where I was told that if I lost 2 more pounds, I’d need to have an NG tube put in. Nasogastric tubes are required in nearly half of radiation patients. Unfortunately, only about half of those that have the tube put in can relearn how to swallow and have it removed after treatment. That meant I’d be at very high risk for never having the tube removed and therefore relying on it for meals. Again, FOREVER. Everything there is “forever,” I tell ya.
So, that decided it for me. Despite each gulp of water and each sip of Ensure caloric shake being debilitatingly painful — I’m talking full tears, shaking pain, I was on oxy and fentanyl all-at-once-level pain — I bucked up and started rewarding myself with Harry Potter movies and Silvadene to get the job done. I’d only let myself watch another HP scene if I swallowed a big gulp of Ensure or Boost. And the Silvadene was this prescribed magical cream used for my severe radiation burns; it cooled the pain and irritation down instantly but would wear off rather quickly. As twisted as it may sound, pain is quite a strong motivator. And the instant relief Silvadene provided was an even better motivator. I managed to maintain weight throughout the remainder of treatment, avoiding the need for the NGT and maintaining what little autonomy I felt I had at that point.
The day I rung the bell, my whole family came to the hospital to cheer me on. It was emotional. It was a relief. It felt like the first step in moving on. 45 days later, I reached out to DePaul for information on their graduate education programs and set my sights on a new career. A career which would be fulfilling, challenging, and new every day. And I buckled up for what would be my next great adventure: moving to Chicago with my wife, two rescue pups, and a stuffed-to-the-brim U-Haul truck, and starting school again.
I continue to get scans and have had a couple scares since treatment ended, but for the most part, I think I’m doing alright. I’m not considered “cured” until I reach five years cancer-free starting on the last day of radiation treatment. Still got a few years before then, but I’m feeling good most days. I am set to begin student teaching this September and have high hopes for the future. I threw myself into school, have maintained straight A’s (something I was far from in my undergrad), and am beyond stoked to start teaching soon.
Chicago was a blank slate for me. I wasn’t going to let cancer follow me here. My wife and I metaphorically skipped across the pond from Missouri to Illinois, headed into the heart of Chicago, hand-in-hand, and I had Sonny and Cher’s “I Got You Babe” stuck in my head.
