Last week Beaudin and I traveled to CHOP in Philadelphia for his 60-month post HuCAR T-cell follow-up.
Here at home, little of our daily life is entrenched in the bone-deep survival that cancer once held. To be clear, it is both everywhere, every single moment a reminder of it all, and also nowhere. We are no longer wondering about his counts every time he coughs or giving him a double take to see if he looks “too pale.” We are not refreshing portals or waiting for return phone calls from the team. And yet, as part of the trial he travels to CHOP every six months for lab work and clinic.
On the flight out, there was terrible turbulence. Not uncommon flying out of Denver, but worse than usual. At one point I noticed that my entire body, from toes to jaw, was completely clenched. Breath in. Breath out. I willed myself to loosen even a single muscle. Is clenching my body going to keep this airplane in the air? Don’t be dumb, Betsy.
I felt the metaphor bubble inside my stiff body. A movement towards Philadelphia and suddenly I am back to believing that holding tighter to every single thing will ensure survival.
I practiced my box breathing, and the plane ascended to a less turbulent altitude over the wheat fields of eastern Kansas. Within 20 minutes, I have relaxed into a movie.
Sometimes I fool myself into thinking my nervous system has fully recovered from that whole cancer thing. A long, hard, wild season, but one in the past. There is no better reminder than stepping off the jet bridge into the Philadelphia airport and realizing my body has kept a record of all of it.
I really noticed this time, which is new and different than just letting it sideswipe me and knock me out from days. I noticed my breath turn shallow. I noticed my voice get tense and my flexibility with Beau’s teen antics get rigid.
I stopped in the terminal and told Beau I needed a minute. I closed my eyes.
Oh, look. Here it is again. I inhaled. My body doing the thing. Worrying. Tightening. I exhaled. It’s ok. we’re ok.
My hyper vigilance was online, reporting for duty.
Everything is different, but nothing has changed.
For the past four and a half years, we have always flown Southwest. This time, because of flight times, we took United. Casual. We didn’t have the flight downloaded for in-flight entertainment. We landed earlier than usual, and in a different terminal, so we did not know where the nearest bathroom was. We had to edit the Uber to pick us up from a different passenger pick-up point.
Everything is different.
The hotel we have stayed in for four + years mentioned renovations at check-in and proudly offered us a newly updated room. On paper, an upgrade.
But when the elevator doors opened on the fifth floor, it was all white walls and light gray carpet. The dark floral hallway we knew, leading into guest rooms with velvety textured wallpaper and a glossy red armoire that made the room feel like something out of Alice in Wonderland, had been replaced with something clean and modern and indistinguishable from every other hotel in 2026.
The guest rooms which had once felt like a portal into a land of wonder, now felt sterile.
“This is a hospital room, but in a hotel,” Beau laughed at the updated decor.
Everything is different.
We decided to walk to our usual restaurant, three blocks toward the river to El Luchador. But as we approached, the lights were off. The windows were boarded. El Luchador was permanently closed. And that was fine, because we are casual and flexible people and it is not that we couldn’t just eat somewhere else. It was just that dinner three blocks toward the river at El Luchador had always been the final exhale in a long travel day.
Everything is different.
Beau was starving and Philly was being Philly. We stood on the street corner and tried to find somewhere else to eat. I searched my phone while Beau watched an 18-wheeler lodge its huge truck into a tiny intersection. The driver got out to assess his troubles and onlookers started yelling at him about how he would inevitably hit something no matter what direction he went. He yelled back that he knew what he was doing. Everyone yelled Philly yells that are neither friendly nor aggressive. Beau looked on and laughed.
Nothing has changed.
We found a couple other dining options on Apple Maps and traversed the city blocks to find them, only to discover that both were closed on this very Tuesday because it was Fat Tuesday. Beaudin was getting toddler-like hangry, so we dipped into a dirty bodega and I instructed him to grab a snack. He grabbed a Diet Dr Pepper and I looked at him like he was insane, but the smirk he gave me took me out right at the knees so I paid the cashier. At that moment I would have paid $1,000 for that soda.
This boy. Me. Alive. Gah, the luck.
Right then an unhoused person burst into the store screaming about gypsies. The shop clerk started to yell at him to get out and Beau and I took our queue and hurried out the door under raised, flailing arms.
Nothing has changed.
At this point we walked past what looked like a hopeful eatery and a woman more or less fell out of the door proclaiming to us, “Go there! It is amazing, truly delicious! A perfect choice!” She wandered off down the street and Beau asked, “Is she high?”
I laughed, “No, why?” (She was clearly sober, just kind, old, happy, midwestern?)
“People in Philly do not act like that!”
“She is not from around here, that is for sure.”
Beau thought overt kindness on the streets of Philly was related to intoxication.
Nothing has changed.
Finally we found our way, basically in a full circle back to the block our hotel was on, to a restaurant that seemed to be the only place with a table open for us. Asian fusion, lovely. On the Chinese New Year, even better. $$$ on OpenTable. Welp. What option did we have? We sat down and Beau marveled at what may have been a top five nicest restaurants of his life.
We ate our weight in dumplings and he enjoyed a Lavender Haze mocktail. I had to remind him to use his napkin, and he pushed me to order both desserts.
After dinner I decided to order myself a champagne.
“Are you celebrating?” the manager inquired as he poured my flute.
Hot tears pooled in my eyes as I looked directly at Beau and replied with a smile, “Everything is different, but nothing has changed.”
Beau looked at me in the way a teen does when he kind of loves it, but also feels embarrassed and I just let my gaze burn holes in to him. I wanted the moment seared into my memory.
The waiter brought dessert, with a lit sparkler, setting it down in front of Beau, and the circling behind me to whisper, “I have a sneaking suspicion tonight needs to be celebrated. This is on the house.”
Leave a Reply