When going through treatment for advanced-stage lung cancer, people would often talk to me like I was a child, or ignore me altogether and speak to my husband.
I was her: the sickest girl in every room.
My cancer was a stupefyingly aggressive form of lung cancer. I’m certain that’s likely not its medical name, but it took me from active to invalid in three months, so I assume close enough.
There was a tumor growing out of my bronchi, and it had almost completely covered my trachea. A 5 cm tumor had grown and crushed the upper lobes of my right lung, making it entirely useless. Collapsed. Worse yet, I developed cachexia, dropping from my normal 98 pounds to 70 and losing most muscle mass.
All this happened in under four months. I was dazed. I was something beyond terrified. Frozen numb.
When my husband carried me into a cancer center infusion room for my first chemotherapy treatment, I also discovered that I was seemingly invisible. At a time when I needed to be seen and heard to assure my confused brain this was real, trying to catch an eye or smile was futile.
So, I learned to watch and listen. I became a keen observer, while noting how truly terrible two Tylenol crushed with a stapler into a Jell-o Snack Pack tasted, but liquid Benadryl was delicious cinnamon fire.
I don’t know what people thought, but 100% of my sharp mental facilities were intact. Dreadfully, people tended to talk to me as if I were a small child.
I had a Winnie the Pooh blanket that went everywhere I did. People couldn’t not say it: “You like Pooh?”
“Only Classic Pooh,” I’d respond, “not that cheddar Disney fake.”
I’d often surprise people with my responses, those of a sarcastic obnoxious girl pretty ticked about this and an armed sailor’s mouth to express it.
I was incredulous at people addressing me through my husband, on top of already being pretty irritated that the sight of me scared people.
Early, I met the nurse who would actually look me in the eye. I met him at 5p.m. on a Friday for an emergency infusion in a hospital room, where I debated if I wanted to go through with the infusion.
My doctor dismissively said, “You can do chemo, or you can have one month. It’s up to you.” He knew I’d rather die than have chemo. That I’m afraid of throwing up. That I'm an artist. That I wanted my dogs. That I was out of room, out of air, out of luck, but mostly that I just wanted to be outside. I didn’t think I could do this.
This nurse knew this because he got on his knees and held my hand and talked and listened to me the 20 minutes it took for me to let go of my pride, express my anger, acknowledge my grief and let him start the “baby dose” of chemo. Fear of the trachea tumor breaking off and choking me, and a necrotic biopsy had slowed what could be done.
“What would you do if you were me?” I asked him. “I don’t know,” he replied honestly. He would be the rock that got me through those first six weeks — someone who talked to me and my husband. People were surprised, I think, to often hear laughter from our corner.
I didn’t show for the fifth baby dose of chemo. I can assume what people thought. In actuality, the chemo hadn’t worked, and the tumor had covered most of my airway and I went unconscious. My husband rushed me to the emergency room, where he was met by an elderly attending physician who told them there was nothing to be done, and the kind thing to do would be to let me go.
It was my mother who demanded I be transferred.
I met several male doctors who told my husband the same thing. I was not an animal to be put down. I’m a yeller, but I’m not Old Yeller. A woman created the plan to get the unbeatable tumor and succeeded. Another woman OKed the immunotherapy.
When I returned to the cancer center six weeks later, it certainly did nothing to up my stock. I ended up in the intensive care unit for 25 days with no food or water — for nine of those days I was in a coma. Then I had six days in hospice, where I was plotting to return to my throne as the sickest girl in the room.
I was now 60 pounds, on oxygen and had all new accessories: a foley catheter, a triple-lumen PICC line, a PEG tube, a trach, a smile. Other people’s eyes held pity, but mine burned with excitement. I lived through hell.
I snuck away from hospice to see the one doctor who knew me. My only hope was that dismissive doctor. I believed she was rational, and I could convince her. I bet my entire life on it. It was a long 45 minutes of hearing “no” before I heard that one “yes.” I would get a dose of Keytruda (pembrolizumab).
During my first trip out in a wheelchair, it was the adults who looked away, but the children that stared. “What’s wrong with that boy?”(Self-esteem booster, there!) “What’s in its neck?”
Parents would shush their children, but I’d answer as many as I could. I was OK. I was just a girl who got sick. “Feel better soon!” they’d say.
And I’d wish so hard that those children worked in medicine.
That first infusion was Aug. 29, 2019. Later in October, I would walk through the doors for the first time. I’d see a few nurses cry, others grab their crosses, one fell to her knees.
Many would actually converse with me for the first time. I would ask, “Did you not acknowledge me, avoid me, ignore me because you thought I’d be dead soon?”
“Yes,” they all admitted. “I guess I get that,” I answered, “but it really sucked.” Most of my nurses remain my friends today.
I stayed in that room the entirety of my cancer journey as a visual reminder to the nurses that there’s always hope.
I had 0% odds. During my last infusions, I noted I was the healthiest girl in the room. I’d always pause to meet the eyes of those still fighting, and nod. I let them know I see them.
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