The C Word – How it All Went Down

I am a fairly healthy 37 year old female. I’ve never smoked, drink rarely, and have no family history of cancer. I remember finding a sore lump under the left side of my chin and asking a doctor I work with if I should be concerned. A friend had just been diagnosed with Lymphoma and another with Neuroendocrine cancer, so I thought I was probably just paranoid. Then I remember finding the lump on my tongue not long after because it had started to hurt there as well and sometimes up into my left ear. I made a dentist appointment, went through weeks of antibiotics and steroids and then was referred to an ENT who tried more steroids. I remember multiple professionals telling me “it’s highly unlikely to be anything serious, you have no risk factors”. I remember the ENT brushing me off but finally ordering a CT scan after about 2 weeks of no change. I remember I was in the bathroom at work when he called to tell me himself (never a good sign) that he was referring me to a surgical oncologist though he still doubted it was cancer. I remember meeting the oncologist and getting the biopsy and him telling me “we won’t know for sure until we have results, but I’m pretty sure you have cancer.” He spelled out the treatment and scheduled me for surgery saying “if it’s not cancer, then you come back and we high five and figure something else out!”

I remember exactly where I was when my phone rang and I recognized the surgeon’s number 2 days after my biopsy. I was charge nurse on the unit. It was a little before 9AM. I answered and made my way back to the break room. I wandered around the table during small talk with the surgeon, and then he hit me with “the results are back already, and you do have cancer.”

I sat there fairly numb, nodded and smiled as I continued to speak but I couldn’t tell you at all what we talked about. I hung up and told coworkers, and called my parents. I could almost hear my mom collapse internally. My dad was crying. I remained calm and consoled them. I’m a nurse, an empath…I’m the one used to being the healer. I couldn’t break out of that role. It didn’t seem real anyway.

I can’t tell you when I first broke down. There were many small breakdowns, most in the beginning having to do with how to tell my 6-year-old son, who was thankfully at his dad’s house that week so I had time to prepare. I went about my life, stopped working to focus on my family and friends and made sure I had everything ready for my fast-approaching surgery day.

Pre-op selfie

I had a pretty extensive surgery on the 27th of August. I was still joking and in a decent mood as I waited in my pre-op room. I sent a few texts, got my Versed cocktail around 8am after meeting with all the key players, and woke up around 9am the next morning, which to me felt like a blink.

During the initial 8-ish hour surgery, my surgical oncologist removed half of my tongue. He also took out 26 lymph nodes in the left side of my neck. Meanwhile, my reconstructive surgeon was busy taking a decent amount of tissue including nerve and my radial artery from my left arm. When the oncologist was done, the reconstructive surgeon used that harvested tissue to rebuild the half of my tongue that was missing. Also, because I’m a nurse and we are always cursed, I wound up losing venous flow in my tissue flap so apparently about 20 min after the first surgery was done, I was back in the OR for another few hours to fix a kinked vein.

Waking up the next morning was rough. I heard people calling my name and felt that I was still on the ventilator (i.e., life support, breathing machine). My arms were tethered to the bed so I couldn’t accidentally pull out anything important. I kept hearing people telling me to take a deep breath, but breathing felt funny not only because of the machine but because I was now breathing through a hole in my neck (tracheostomy). I hurt everywhere. I was confused. I didn’t know anyone and I couldn’t talk or write or make my needs known in any way those first few hours. It felt like days when finally I saw my first visitor, my manager from work. She told me I was still in PACU waiting for a bed on the surgical IMC and she wasn’t allowed to stay with me there but would see me again in my room. She said everything went well and I was breathing fine on my own and the surgeon thought he got all the cancer. I was relieved but still so incredibly anxious about getting to my room and healing.

Once in my room, my parents came in to see me. I was a swollen mess with tubes everywhere (4 drains, a wound vac, an arterial line, 2 IVs, an NG tube, and a Foley catheter), a bite block in my mouth that had to stay for at least 4 days, and an arm splint …but I managed to give them a thumbs up.

Finally in my room after over 24 hours in surgery and peri-op areas

I stayed in the hospital for 7 days. I dealt with a sore bottom (from laying flat on the surgical table and bed for so long), the joys of tube feeding, a trach that didn’t sit quite right and plugged on me one night causing a mini-party of nurses and doctors to run in, and had a full trach change right in my bed. I also had the trach removed right there. The first few days I couldn’t bathe myself or even wipe after using the restroom. I had to call for help for everything. I remember sitting half-naked in the bathroom, a nursing student gently bathing me with warm water and helping me get dressed. In that moment I felt incredibly humbled. So many times I had been on the other side, and now I knew how my patients felt. I was also incredibly grateful for the compassion and empathy most of the nurses and other team members had.

Little by little I got stronger and by the last day I was ready to GO. I met with a speech therapist who cleared me to eat pureed food and thin liquids. I met with a physical therapist to prove I could walk. And then I was on my own (with my parents and lots of tube feeding and wound dressing equipment).

Going home dealt a whole new level of obstacles I hadn’t thought of. Timing meals, getting places, showering, getting dressed, sleeping in a real bed, cats…but I was not even remotely prepared for the emotional tidal wave that would hit.

To be continued…

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