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Peter Pan's message

Updated: Oct 10, 2023

After I was discharged from the hospital, I slept at my parents' house the next few nights because I was in so much pain physically and emotionally. I couldn’t let the girls see me like this. Even though my throat was killing me, there was no time to heal. The diagnosis was B-Cell Aggressive Non-Hodgkin's Lymphoma. I was thrown into PET scans and doctors' appointments immediately, coming up with a plan to start R-CHOP chemotherapy, which they called the “big guns,” followed by twenty sessions of radiation to my neck and the back of my mouth. The oncologist was cold and never said anything about survival, or that I would be okay. She acted like a robot and sent me for a bone marrow biopsy, ignoring my request for a stronger drug than Valium to get me through the procedure. I wanted to be knocked out for this—and also for the rest of the year!

I sat down with the nurse coordinator who explained the chemo and radiation. She had a packet in front of her, going through all of the horrible and awful side effects that can happen, will happen, or most likely won’t happen—but could. I was signing papers stating I wouldn’t hold the doctor responsible, and at some point I stopped listening to the nurse completely, only watching her lips moving. I was wondering if this was really the right route for me. Do I want to do this? I felt the warm tears squeezing out the sides of my eyes and could only stare at her lips without hearing a thing. She was robotic as well, with no emotion, just doing her job of reading the packet of all the depressing things that could ruin my life.

I couldn’t stop thinking about Tula. She was healing, doing so well, and still so fragile. I was terrified of giving up control and letting others help. People offered to make dinners for us but I declined every time. I allowed my mom to help out but still didn’t trust her enough to get it right, so I still had to be involved around everything that went into Tula's mouth. Remarkably it was Tula who was overly vigilant, double checking with me that the food Yiayia was giving her was okay.

I finally went to my own house to sleep. I needed to display some sort of smile for my girls, who hadn’t seen me in days. I eventually told them I had a sick tonsil and would need medicine for it that would make me feel sick, sleepy, and make my hair fall out. They listened and went right back to playing without any questions. I had a dream that night that will stay forever with me. I dreamed I was walking to a roller coaster with my dad. It was much different than any other ride I had been on and I was scared. We went on it together—in the dark, twisting and turning. I heard people screaming and I almost threw up. I shut my eyes tight and just kept thinking, Keep your eyes closed! My dad noticed my eyes were shut and he yelled, “It’s not a big deal! I’ve been in these before!” The ride was finally over and I felt worried about Tula. I saw all of these other scared kids with their parents and I frantically looked for mine. All of a sudden I'm transported to a kind of paradise where it’s sunny and lined with palm trees, and I’m walking through this field with placed stones on the ground surrounded by grass. I’m carefully walking only on the stones, staying on the path. There are only a few people around me and they're moving slowly, and I notice Mike on his phone going to a reception of some sort, completely distracted, not even noticing me. I'm now walking off the path of stones and cut across the grass, then run down a hill and see this beautiful reception happening, and it looks like heaven. Huge white columns, a gigantic pool overlooking the sea, all sorts of animals, and people dressed up eating appetizers. I’m frantically looking for the girls and my mom, but it’s so beautiful right where I am at the same time. The Peter Pan song “You Can Fly” is playing, I start to wake up. And the last thing that was said to me before I opened my eyes was the line from the song, “All it takes is faith and trust.”

© Copyright A Journey Off the Spectrum 2022

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