I switched from my targeted therapy back to chemo the week before Christmas. After two years, it was clear the drug had run its course and I showed enough minor progression to agree it was time to call it a day. Having lived with a very noticeable rash on my face for the better part of those two years, I welcomed the change back to a chemo regimen I was familiar with, and willingly traded feeling normal for looking normal.
How I would tolerate it was a toss up. In the past, I had been both oddly normal and extremely miserable after infusions. Immediately after this pre-Christmas infusion, is was clear I was going to be the latter. Though the nausea was kept at bay by my beloved antiemetic IV drug Emend, the feeling of fatigue was something I couldn't fix with a pill. The only way I've ever been able to describe that feeling of chemo malaise is as a very bad hangover – only this one can't be cured by a hearty breakfast and a day of rest.
One of the things my cancer diagnosis did was shift my focus away from the material expectations of Christmas, and put it more on the experiences surrounding the holiday. Experiences create memories, and if I didn't survive this disease, memories would be all my boys would have of me. Our Christmas tree became less about the quantities under it, and more about the traditions that flooded each of our senses during the month. One of the most notable for my 11-year-old was the monkey bread I got up early to bake each Christmas morning, and the hot chocolate topped with whipped cream and Christmas sprinkles. It was something I started making for him that first Christmas after I was diagnosed, as I pushed "Operation Christmas Experiences" full steam ahead.
The problem I now faced was that I was too sick to go to the store to get the baking supplies I'd need, and I didn't have the energy it would take to stand at the counter and make this annual breakfast dripping in sugar and butter. I laid in bed trying not to cry at the disappointing morning my kids were about to have, and couldn't stop beating myself up, angry at the cancer that was once again ruining a chance to make a magical memory.
Late on Christmas Eve, I put a coat on over my pajamas and shuffled my way into the store, hoping no one would get close enough to noticed I hadn't showered in several days. I explained to the kids that we weren't there to buy ingredients for the gooey bread they would normally expect. Instead I told them they could choose something from the freezer section for dinner, and I headed to the bakery to select the most delectable muffins I could find to make up for the lack of baking in the morning.
As I sat at the dinner table that night watching them eat the frozen pizza they chose, I continued to feel defeated by this disease. I needed to be reminded of my own advice I give to other parents facing cancer – to mourn the loss of moments that will be taken by this disease. There are things that will not be in our control, and this Christmas was one of them for me. I tried to keep my emotions at bay as my kids ate, knowing they probably thought pizza was greater than any holiday feast most could dream up.
As we sat together at the table, I again told them how sorry I was for such a disappointing night that left them stranded at home playing video games and eating a meal that wasn't exactly made with love and holiday spirit. As I apologize again for the lack of monkey bread in the morning, my oldest held his hand up and stopped me. "You are here. We are together. That's all that matters."
I stopped beating myself up in that moment, and reminded myself of the truth: children really are resilient, and if you give them pizza and sugar, they're generally going to be thrilled no matter how special the holiday. As much as I know it, sometimes they still need to remind me that they are OK, and they will be OK with or without the whipped cream with Christmas sprinkles on top.