They switched me over to a more aggressive chemo a few weeks ago. It is pretty terrible for the first week. It causes an acute sensitivity to cold. Anything that touches my skin, mouth, or throat that is colder than about 70 degrees hurts. I get dehydrated easily because drinking 70-degree water is gross and tea gives me heartburn. When my salivary glands or tear ducts release, it sends a shooting pain through my head for about 30 seconds. So crying and beginning a meal are both very painful activities. Imagine being terminally ill the year your son is set to graduate high school and trying to not cry. It’s like a big mean cosmic joke.
Three weeks ago, I started to develop skin lesions that have baffled two oncologists and three dermatologists as well as my Palliative Care doc. No one wants to be a medical mystery. Remember when I was complaining about every day being the same? I kind of miss that monotony now that I’m such a puzzle.
My hair is ridiculous. Since I shaved it last February, it’s grown ¼ to 1 inch, depending on where on my head you’re measuring. I don’t mind how messy the top is… some even consider it stylish, kind of. But the sides are ridiculous. I’d almost rather be bald than have the swirly, fuzzy mess that is there right now!
Because of the lesions, I haven’t been able to wear normal clothes because those areas are just too sensitive. So sweats and leggings are my new uniform. I had the honor of attending the letter of intent signing event for a young woman in Max’s class who will be playing D1 college basketball next year. What an exciting moment for her family and for our community. I had to choose between going in my sweats with my chemo pump hanging on my shoulder or staying on the couch and waiting for the pictures to be posted on Facebook. Because of my chronic FOMO, I went. I looked terrible, but I was so glad I was there for it… and not just because their cousin makes amazing cookies.
One important lesson I’ve learned through all of this is that dignity is sometimes a choice. Once you’ve been poked, prodded, had your rectal muscles checked for responsiveness, shown the lesions on your breast to a room full of doctors, and had your hairstyle decided upon by deadly/lifesaving chemicals, it’s easy to lose the feeling of having it all together. But in my case, I can choose to hang on to it.
Yep. I’ve been forced into a situation that regularly tries to snatch my dignity, but I haven’t let it go. I’ve chosen to be proud of my fight; my strong body; the mittens I need to wear in the refrigerated section of the grocery store: my highly responsive rectal muscles. Even if it means wearing my nicest sweats to parties, I’m going to go with my (hat-covered) head held high.