Hi there!
I’m Maddie Huebner. My picture rode across the country with Team Will last month, and they asked if I would share some thoughts from the perspective of a childhood cancer survivor. Here goes!
Sunday, July 27th marks the two-year anniversary of my diagnosis. As I reflect on that day, I realize how much I’ve learned since then-about cancer (separating the facts from the fiction), about the amazing qualities of people (like those in the members of Team Will), and about how to live life to the fullest.
The stern looks on the oncologists’ faces made me nervous. It was a regular Thursday morning at Children’s Hospital of Wisconsin and the day after my fifteenth birthday when my mom and I sat with three close friends, and three doctors around a large business table.
“Madison, the CT scans show that you have a neuroendocrine carcinoid tumor in the base of your tongue. We think the best route is to begin chemotherapy, today,” revealed the doctor.
My mind went blank and my fingers went numb. I was just a normal, healthy teenager until that moment. After hearing the news, I instantly became a disease instead of a person. While I was still in a daze, the doctor continued to babble about the treatment plan and drugs that were to be used, but I didn’t hear a word of it. Later on, I would learn that I would be receiving FOLFOX, a combination of Folic Acid, Leukovorin, and Oxaliplatin. All I could think was, “what is going on? This can’t be happening to me. I have to go home to ride my horse to practice for our next show.”
Once they were finished, the doctors left the five of us alone to discuss everything and decide what we wanted to do. Beginning to realize what was really going on, I broke down. I turned to the person who was sitting next to me, and began to shake. Out of the corner of my eye, I saw Teri, a close family friend, reach for the Kleenex box.
“Well, Madison, what would you like to do?” asked the head oncologist when he returned. “When would you like to begin?”
“Today,” I could barely squeak out.
“Alright, you know, this is your decision. You don’t have to do anything if you don’t want to, but you know that this tumor will probably continue to grow. No one will make you do this, but the other options do not hold much promise,” the experienced doctor told me in a hushed, yet matter-of-fact tone as I took time signing my name on a few pieces of paper. I could barely see the straight line through foggy eyes.
Once it was a done deal, I was sent to have a PICC line inserted into my arm so I wouldn’t need a new IV inserted every time I needed blood drawn, fluids, medication, or chemo drugs. With my left arm held as still as possible in front of two focused nurses dressed in brightly colored scrubs and my right hand tightly enlacing that of Michael, a father-figure to me, I stared into his eyes.“Maddie, focus. Picture yourself riding.” The horse I chose was Benny, a black gelding that I had ridden English, and I began counting, “one, two, one, two,” and mentally posting the rhythm of his long-strided trot.
When the nurses declared that they were done, I opened my eyes to see the faces of six people staring at me, released my death-grip on Michael’s hand, and took a deep breath before gazing down at the inside of my left elbow to find a thin white tube extending halfway down my forearm. I watched the nurse push a syringe of liquid into the tube and licked my lips as the taste of metal overpowered my empty mouth. “It’s just saline,” one nurse responded.
Once the nurses had left, the waiting game began. Teri, my mom, and I watched TV and chatted while waiting for my chemo concoction to be mixed and arrive. Once I was fully hydrated and the potion had brewed, the nurse came in wearing a full blue gown with thick rubber gloves as she carried a clear bag over to the IV pole like a hot potato that she was afraid to drop. She looked like someone from the movie “Outbreak” and I was monkey who was infected. After two hours of playing cards, I watched the last bit of liquid empty out of the bag, flow through the translucent tube, and knew that its final destination was into my body. When it finally disappeared, the shrill, “beep, beep, beep” sound of the IV machine began to ring and I hit the “nurse call” button signaling that it was done. That piercing sound is enough to awake even my brother from a dead sleep.
“That’s it?” I questioned as the nurse entered the room. “Yup, that’s it,” she declared. I guess I had expected fireworks to explode halfway through or something significant to happen.
Following the Oxilaplatin were two 22-hour infusions of Leukovorin to flush my system of chemotherapy toxins. When I could no longer fight the anti-nausea drugs, that I was told would make me drowsy and loopy, I called out to Teri before she left, “I love you, Teri!” before drifting off into a medicine-induced sleep that lasted on and off for the next two days. My routine fell into a pattern of waking up, finding something potentially palatable off the hospital menu, taking morning meds, sleeping, waking up every so often for more meds, sleeping, watching TV, and sleeping some more.
Every so often, a spell of nausea would awaken me. All it took was a brief announcement to the nurse on call. “I feel like I’m going to throw up.” Before I could finish the sentence, a nurse was running through the door with a bucket in hand.
The simple task of washing my hands posed problems. The tepid water sent a tingling sensation through my arms as a result of cold neuropathies, and the stench of hospital soap on freshly cleaned hands would linger in the air for hours.
By 9:00 Saturday night, my mom had scrambled around the room and had everything neatly packed and organized. When the final cry of the IV machine told us my fluid infusion was over, she joyfully leapt out of her seat and alerted the nurse that I was finished. Out of the HOT unit and onto the skywalk, my mom sprinted out the doors pushing me in a balloon-adorned wheelchair, and I paused to gaze out at the clear black night. We were finally going home.
Van, one of our shift riders, had a sudden burst of energy and found it within himself to take all of our water bottles and do a significant decontamination procedure upon them. Coincidentally, he performed this great act of shift kindness on the same day Greg went south. His procedure involved saturating our bottles with large amounts of BLEACH. Yes, that is correct bleach. I was fully unaware that my shift mate had received such an inspiration, and had quite a surprise in store later that evening when riding.
