The pictures were taken at my parents' 50th anniversary party. They had a small picnic for our family at a park called Flat Iron Mesa in Sandy, Utah, where we grew up.
Matt and I flew to Salt Lake a couple of days prior. Traveling is always hard for me, especially flying, but airports have become easier since I started using the Sunflower lanyard. It’s for people with hidden disabilities, and wearing it means you can use the ADA accessibility line at TSA and board the plane early. I also started doing things like wearing earplugs and sunglasses, which both help a lot for being sensitive to overstimulation.
Because I often get migraines when we fly somewhere, I came prepared. I wore a large black eye mask, a new neck pillow, and my sound-canceling Bluetooth headphones. When we got on the plane, a woman was breastfeeding her baby across the aisle from us.
Because I had tuned out the world after sitting down, I didn’t know that she moved to the unoccupied seats behind us. I don’t blame her. I have sisters with kids, so I know that any woman doing this, especially alone, is stressed out. An extra seat would give her room to manage everything.
Unfortunately, the baby began screaming. Not crying— screaming, louder than I had ever heard any baby scream. Even with sound-canceling earbuds in and the music turned up, the sound hurt my ears.
I know that the woman was struggling to get him to stop, but treatment made me more sensitive to loud sounds. Luckily, the baby eventually stopped. But then I kept feeling the plane moving, picking up speed as if it was about to take off, and then stopping again. Over and over.
You know this feeling. You keep thinking, “This time it’s speeding up more, so it will take off.” But it doesn’t. And then it doesn’t again. And then it doesn’t again. Usually, the captain doesn’t fill you in on what’s happening. Our flight had already been delayed by over an hour, and we waited on the tarmac for a good 45 minutes before finally taking off.
The stewardess came by with her cart to pass out drinks. I ordered a Coke Zero with a cup. I poured the Coke into the cup and drank a little. Shortly after that, as it often does, my right hand jerked involuntarily, spilling almost the entire Coke on my tray table and lap.
“Clumsiness” is a common symptom of brain tumors, but that word doesn’t quite do it justice. I sometimes refer to my right arm as my “Jimmy arm” (in reference to a Seinfeld episode where Kramer’s girlfriend keeps kicking him in her sleep.) That’s the best way I can describe it – it’s involuntary, spastic, and unpredictable.
The spilled Coke quickly ran between my legs and under my butt so that I was sitting in that sticky, wet mess. I stood up, but only halfway, because it had also spilled onto my tray table, and pushing it back up would have spilled even more Coke onto my backpack. Matt looked over at me and seemed confused. Normally, he jumps into action when I drop or spill something. Later, he told me that he had been watching a movie with his headphones in, so he didn’t realize what was happening. When he did, he handed me his napkins so I could try to contain some of the mess.
We called the stewardess over and she handed me more napkins—those tiny, paper-thin squares. She said it was the rest she had left. (Why didn’t she run to the bathroom and grab some paper towels? In fact, why don’t they have actual towels for such accidents?)
At least since I hadn’t thought to grab my hoodie and soak up the coke with that, I was able to tie it around my waist when we arrived at the other airport. It was okay that it didn't cover the front since it had mostly run under my butt rather than over my crotch.
It’s a funny story to tell now, but I had already been teetering on the edge of a migraine after the baby screaming, so when this happened, I knew it was coming. For the rest of the flight, I had to sit on my wet butt with that dreadful feeling of a migraine coming on.
At the Salt Lake airport, I took my time to clean myself up in the bathroom. I wanted to take off my underwear and hold it under the hand dryer, but that might have looked weird.
The airport has undergone major construction, so it's a hike to get from the B gates to baggage claim. When we arrived, no one was there, and the carousel had stopped. Our bags were right there patiently waiting for us. I was relieved to have one good thing happen.
We went out to the passenger pick-up to meet my parents. “I have a migraine," I said as I hugged them hello. These words have been uttered here too many times now.
We usually stay with them in Saratoga Springs, but this time we were only going to stay there the first night and the rest of the time at my brother Preston's. But he lives in Sandy, close to Flat Iron Mesa and only 20 minutes from the airport, so he let us come early because of my migraine. My parents dropped me off there instead of driving another 35 minutes to their house.
I felt bad that I couldn’t go to my parents’ after they drove all the way to the airport to pick us up. My dad was going to show us a part of the lake we hadn't seen before. They both love Matt, and we all enjoy each other's company. But it was a good choice to stay at Preston’s. It was cool, quiet, and a good place to recover.
Saturday, the day of the party, I got another migraine.
I always seem to get them right before something important. I hate it. I was looking forward to seeing my family and celebrating my parents’ rare and outstanding commitment to each other. The doctors say the migraines are not related to my tumor, but they are constantly interacting. During and after treatment, I missed countless parades, holidays, and birthday dinners, either because of migraines or other chemo symptoms. I don't vomit anymore, but when I did, it would sometimes trigger a migraine. I still have fatigue, and sometimes I get one if I don't take a nap when I need to. After finally (mostly) recovering from treatment, it doesn’t seem fair that they still happen.
Fortunately, this migraine had been shorter since I had taken my rescue med early. I took a nap and felt better afterward, so we made it. The party started at 4:30, and we arrived about an hour late, but we made it!
The Utah sun burns fiercely that time of day, and bright sun and heat are a couple of my triggers. I greeted my family and got a plate of food, but then my timer went off, so I took my food out to the car. I have to time myself, usually every 20 minutes, to take a break from almost anything I'm doing. I close my eyes, breathe, sometimes stretch a little, and check in with myself. After a few minutes, I realized it was more difficult to try not to spill any of my food in the car than it would be sitting at a table, so I took it back to the shade of the pavilion.
The pictures started a few minutes later. My cousin Lexi was the photographer. We began with my parents and siblings in the hot sun. Then we moved under the shade of some trees and included all the spouses and kids. They said we were done, so I began walking back toward the pavilion, but I heard my mom calling my name. They wanted a few more.
Then Lexi took some with each of my siblings’ families, and asked if I wanted some with just Matt and me. I was hot, tired, and drained, so I said no. Later, she asked again. I'm sure she was just trying to be nice, but I had to say no again. It’s hard for me to say no once, let alone a second time, but I was glad I did. If I had, I might have triggered another migraine.
Lexi did an awesome job. She was very patient, posed us well, and like I said in the beginning, the pictures turned out great. We all look happy and healthy, and it’s easy to think that everything is hunky-dorey based on a picture like this. But we have all had dark times in our lives. I try not to focus on them, but I refuse to pretend they don't exist.
I know that people want to believe that I'm okay. That over 75% shrinkage means that I’m all better and everything is going to be fine. It's undoubtedly great news, but it doesn't mean I'm cured.
So next time you come across a family member, friend, or even a stranger who seems to be in a bad mood, give them a little grace. Next time there’s a mean or angry employee who provides you with poor customer service, think about what their day could have been like. Maybe their mom just died. Maybe their boss just yelled at them. Maybe they had terrible parents who abused them. Their child has a serious illness. They have brain cancer.
Try being kind to them anyway. Show them a little empathy. You might be surprised by what happens next.
