Here are some of the worst things about my cancer/chemo journey, not that anyone asked.
Worst chemo side effects?
Bone and joint pain! oh, i hate this. It's like a dull, nagging soreness in my knees, shoulders, wrists, ankles. In my arms and legs. Especially at the end of the day and first thing in the morning. Tylenol will knock it out usually, but I am always worried about timing the pills so I can sleep through it.
Hair loss. The journey that I have been on with my hair this year is long and complicated. I look like a crazy person almost every morning. I started trimming my hair as it thinned, doing a half-assed job. Finally got it cut in July, and it looked like healthy hair again for a few weeks before even at that short length the hair loss beat out my attempts to look like myself. I no longer ask folks what they think because I am terrified of hearing the lie in their voice when they say they haven't noticed. I wear my hair up every day and am not far from putting a scarf over it all.
Tired is not the right word. My body feels like someone else has used up all the fuel, all the youth and strength, and I am left piloting a vehicle with no gas in the tank, trying to turn the radio off to conserve juice. It comes at awful times when I want to push through...baseball games, birthday parties, August's school picnic. Sometimes I cry form exhaustion, or faint. It is embarrassing and frustrating. I have never not been able to will my way through a situation before, and I hate feeling so tired, so weak.
Best? That's easy. The people who came though for me in a thousand small and big ways. Chris, holding my hand as they punctured my port the first time. Emily sending August ice cream money. Promising to visit if I would just ask. Jenna surprising me, traveling down for our not quite chemo weekend in a hotel. Marsh, Omo, Dave, Delaney, Mom, Jon, Diane, and Steve all pitching in to help with childcare so I could focus on work and my health. Sheila sending me articles about head shaving and information so I wouldn't have to do my own depressing research. The flexibility offered to me by David Lang at work. Oh the sweet, thoughtful support of my amazing students. The words from folks I'd lost contact with over time. The jammies from Melanie and my cancer guidance and gifts form Aunt Joanne. Chris taking care of August, making me a milkshake or soup or dinner. Chris telling me I look the same as I did when we started dating 6 months into chemo draining all the rapid multiplying cells form my tired body. Chris sitting with me at the infusion center, putting on ancient aliens and the price is right. Trish, calling to check in day after day, making sure I am okay after every day. Emily, tracking my chemo schedule from Indiana. Jenna, being the place I put my fears, my safe place to be honest and sad and scared, so I could be happy and positive the rest of the time. Trish organizing my meal train. Nathanial and Belinda picking up where Chris and I leave off with Squidy.
Strangest? The journey progression that hair loss has been. It was not a single day, a moment. Hair loss was a daily reminder of being sick, evidence of chemo hanging off me and staring at me from the mirror morning after morning. I started to dread shampooing because the unmanageable handfuls of lost hair I had the frustrating chore of collecting each morning. I cried in the shower about that one a lot.
Sitting in the big comfy chairs at the infusion center every other week, I was surprised but how much my fellow patients complained. I get it, to some extent. We're sick. But isn't that the best reason ever to try to see the bright side, to take control, in the face of such loss of control over our bodies, of how we feel and react? I get that I might sound naive, but for me that's what made this whole process simpler; the control I had over me. I lost control of my body and choices in so many ways, between the surgeries and scars, the implanted port, the limitations on what would make the chemo worse, and the ways my body responded to the chemo with more limitations. So smiling and laughing in the face of all of it felt like the way to win, the way to pass the time with all of the wonderful nurses who made it as painless (literally and figuratively) as possible.
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