2004: The year that changed my life.

As soon as the X-ray was put up, I knew. “I have cancer,” I thought. The X-ray showed only one lung, where two should have been. Then the doctor left the room. My brain spun out of control.

A week prior I started having breathing problems. Stabbing pain in my chest, shortness of breath. Uncommon things for a 17-year-old. Years spent on my high school dance team had toned my body, years of choir had toned my lungs. Something wasn’t right. I couldn’t even make it up a flight of stairs without resting.

My mom took me to the clinic, where the doc did some listening and determined I had pleurisy (inflamed lining of the lungs). He instructed me to take some ibuprofen, put a hot pad on my chest, and take it easy for a few days. Things should clear up on their own. Nothing contagious, nothing serious. Simple enough.

But it wasn’t simple at all.

Passing out due to lack of oxygen is scary, if you’ve never experienced it. And I hadn’t, until I did.

My hearing started to get fuzzy, then the edges of my vision darkened, slowly swallowing the world around me. Combined with the pain in my chest it felt like drowning on dry land. I was at work, and abandoned my customer service post. Trying frantically to make it to the break room before I blacked out. I managed to get to the doorway before the dizziness took me.

Attempting to use a swinging door for balance isn’t a great plan, turns out. Chaotic dizziness caused me to pull the door back and forth on its hinges, slamming me and the door repeatedly into the wall… Causing a lot of commotion in an otherwise quiet hallway. My managers heard the ruckus and were somehow able to peel me (in all my hysterical glory) off the door. They walked me to the break room – nearly blind, nearly deaf, and spinning – and I collapsed into a chair. The dizziness began to subside.

Then the questions came.

“Are you pregnant?”

“Are you on drugs?”

“What aren’t you telling us?”

It was none of those things. 

“Do we need to call your mom?”

Uh, yeah. Call her please.

Back to the doctor. This time we insisted on an X-ray.

As soon as the X-ray was put up, I knew. “I have cancer,” I thought. The X-ray showed only one lung, where two should have been. Then the doctor left the room. My brain spun out of control.

He returned a few minutes later, and pointed to the black hole where my lung should have been. “Pneumothorax,” he said. “Collapsed lung.” That explains the stabbing pains, shortness of breath, and blackouts. He was amazed I was up walking around. I said a little prayer and let out the breath I had been holding, thankful that my fears were unwarranted.

They sent me to the local hospital to have a chest tube placed, which would allow the air to escape from my chest cavity, and re-inflate my lung.

Prior to the surgery, I had a CT scan so the surgeon could better see what he was working with. The scan revealed that it was not air in my chest cavity, as previously thought, but liquid. Goo. Where my lung should have been. A thin, football-sized disc floated in my chest cavity, stealthily. Invisible to the X-ray. Pumping vile liquid into my chest.

Cancer. I had cancer.

The doctors and nurses at my local hospital were amazing, for the few hours I was there. They shook up a violent cocktail that made me relax, forget, and sleep. They inserted a tube between my ribs so the liquid could begin draining out. They called an ambulance to take me to a bigger city, two hours’ drive away, to begin cancer treatment.

Two hours prior, I didn’t have cancer. I guess that’s how life goes.

I remember waking up in a room, to my parents’ faces and the sound of my close friend screaming in the hallway. I said goodbye and was loaded into the ambulance, doing my best to put on a brave face… Joking with the EMTs, despite my pulse being 120 BPM. Terrified. I remember being disappointed that they didn’t have the lights and siren on for the journey.

The first couple of weeks in the hospital were a blur… Scans, tests, discussions, decisions, and sleep. Looking at my reflection in the elevator doors and wondering why I didn’t look like me, but like a sick, hollowed-out version of myself. Honestly, I don’t remember much else. (Maybe it’s a coping mechanism.) My parents were able to stay at a nearby Ronald McDonald House, which made the transition easier, but being a 17-year-old in a brightly-colored pediatric ward was strange. Being in the hospital was strange. Hell, just being a teenager was strange.

The chest tube did its job, and with practice I was able to regain lung function. I underwent a procedure where bone marrow was extracted from my hip bones to check for Leukemia. Thankfully, that test was negative, but didn’t change the fact that I had cancer. T-Cell Lymphoblastic Lymphoma. Blood cancer.

One more surgery to install a port-a-cath (or “port,” a semi-permanent IV access point inserted under the skin just below the collar bone, with a catheter inserted directly into a large vein). Traumatized, but stable, I was able to leave the ICU, and later move to the Ronald McDonald House with my parents. Then we got to move back home.

Some cancer survivors talk about “rounds” of chemo… That wasn’t an option for me. Due to the type of cancer, the treatment was long and aggressive, but had an excellent prognosis. The doctors told me I was lucky. Lucky to have Non-Hodgkin Lymphoma. Lucky I didn’t have ALL or Hodgkin or anything else. This specific type of cancer was “the type to get.” 

I tried not to roll my eyes at that.

I chose to participate in a study which would inform future treatments for individuals facing similar cancers. The outlook was fairly positive for any path, so I was assigned a randomly-ordered treatment plan: two years of chemotherapy, with several phases in varying aggressiveness. Spinal taps. Day-long IV drips. Intramuscular injections. And thousands of pills.

Tens of different medications, all with different schedules. Cyclophosphamide, doxorubicin, vincristine, L-asparaginase, methotrexate, cytarabine. High doses of prednisone made my body thin, my face swollen, and my mood volatile. I joked that I looked like an alien. But really? I wasn’t joking.

My doctors prepared me for the worst: The treatments would likely damage my reproductive system, and I may never have children. Prior to this I had hoped for a bunch of kids, a big family. And now my dreams were shattered.

I had my shoulder-length hair cut short before it all fell out, but still cried when clumps began to come loose. Near Christmas I held my head over a garbage can and shaved it off. The stubble fell out soon afterward. Merry Christmas. My hair was gone.

Again, I put on a brave face, a stocking cap, and tried to socialize while I still could – during future phases of my treatment plan my immune system wouldn’t allow me to leave the house. People stared, and I don’t blame them. My face was round and puffy, my hair and eyebrows nonexistent. 

I called this my “new normal.” You don’t fully understand how to get through something like this, until it happens. You just DO. Or you die.

Future phases caused me to miss out on much of life with my friends and family. I couldn’t attend family weddings or graduation ceremonies. Couldn’t go shopping or to the movies. I was alienated. Maybe I was an alien. But my family and close friends never gave up on me.

I remember one of my friends sneaking into my window one night with mini-donuts from the county fair (which I was unable to attend due to the large crowds of people). Mini-donuts were my favorite, and she knew that. She even shaved her head as a show of solidarity.

My parents didn’t give up. Ever. Even when I was angry at everyone and everything. Even when my medical bills totaled more than a million dollars (thankful we had insurance, our out-of-pocket costs were much less). They were still there for me. And they still are. 

Not everyone took this path. Some friends of mine couldn’t cope with my “new normal,” and turned away. My high-school sweetheart cheated on me, then dumped me.

I rejected therapy and support groups. I rejected the idea of throwing a benefit fundraiser to help with costs. I didn’t want attention. And I didn’t want to be different.

Eventually word did spread about what I was going through (pre-social media, even), and people started visiting me at home. Close friends. Extended family. People I hadn’t really spoken to in high school. Even people I thought hated me. A guy who had once thrown me in a cafeteria garbage can came to visit. He cried, and gave me a hug.

Many people credit their strength through their cancer journeys to God, or to some higher being. But I’m a firm believer that it was my own strength combined with the strength and support of my family and friends that got me through it.

It’s been 15 years since my diagnosis now, and June 28, 2019 marked 13 years cancer free. I’m kinder and more patient now than I ever was as a teenager, and I’ve got a family of my own. A husband, a step-son, and two wild boys of my own, after being told that I’d never have kids. 

I’ve got scars to remind me where I came from, and what pulled me through. But as the scars fade, the memories fade as well. What was once vivid and painful is now muted and blurry. Smudges. Glimpses. But I’ll never forget the people who stood by me when all seemed lost. My “new normal” is just… normal.

If you’re in the thick of it right now, drowning in chemo or burnt by radiation, know that there is an end, and it’s better than you could possibly imagine. Lean on your friends and family, and know that you don’t have to do this alone.

If you know someone who is going through a cancer journey of their own, call them. Pop in and say hi. Let them know you haven’t forgotten, and that you love them. It may be awkward, it may be uncomfortable, but it may mean the world to them.

And if you’re reading this right now, take a moment to appreciate your life where it’s at right now. Even if it’s messy or imperfect. Because it changes so quickly, and we don’t have a choice but to go along for the ride.

Published by neverbenn

Thinker. Doer. Serial helper. Serial learner. Bookbinder. Book reader. Writer. (Book obsessed.) Tech geek. Geek geek. Proud nerd. Gamer. Creator. Hobbyist. Neverwinter guild lead. Cleric.

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1 Comment

  1. You were so brave and persevered through it all. How well I remember your smiles and how lovely you were at your wedding. Your boys are so cute!!

    Like

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