Loss of Power

I imagined I’d be writing here on a regular and more predictable schedule. I imagined a lot of things. 

I started chemotherapy on Tuesday November 12. Let me backup a bit. 

My last few days of teaching flew by too quickly. Once I received my chemo schedule I had to share that I only had three days of work left. I told my colleagues, I told my students, admin told my students’ families, then I told my students’ families why. The next 72 hours were a roller coaster of finishing tasks, talking with everyone who stopped by my room, trying to keep a routine going in the classroom, and staying sane. We did Morning Meeting, we caught leaves and blew bubbles outside with Shannon’s class. We did phonics and finished our Kandinsky leaf art. We listened to music and reminded ourselves of what six months would look like on the calendar (the time I’d be gone.) We finished reading The Miraculous Journey of Edward Tulane, the final pages of which literally took their breath away. I went to Happy Hour and laughed and hugged and cried a little. 

On Sunday night we stopped by to celebrate Ashley’s birthday. I’m so glad that we had the chance to visit. It reminded me of how our precious friendship began because we were gathered with several of the same people who’d been there at the beginning. We then had dinner with Kristin and Shawn. It was a beautiful spread of delicious, colorful, healthy, and reassuring food matched only by our laughter and the music and the simple joy of company that is family. I eventually had the courage to share how scared I was, to say aloud more of the fears that I couldn’t let go. Kristin and Shawn and Tom just sat with me and nodded, or held my hand and listened and reminded me that the outcome, as stated by my doctor, was going to be a good one.

Monday was spent gathering the items for my chemo bag, the concept and contents of which had been a complete mystery to me just a few short weeks ago. Most of the things inside were provided by my friends: a blanket, chapstick,lotion, a book, frozen socks and mittens to prevent neuropathy, cozy socks for afterwards. Thanks to everyone’s efforts to mobilize, I was fully equipped for Round 1.

Which brings us back to Tuesday, November 12, or in chemo speak, Day 1.

Day 1 was lovely. I woke up with a sense of determination and a willingness to receive the meds I knew were going to heal me. Three and a half hours of relaxing in a reclining chair with heat and massage and an incredible chemo nurse who walked me through each step in great detail. Tom was by my side and I felt reassured, confident, and for the first time in weeks, calm. 

Day 2 was great. I went back to the infusion center to get a white blood cell shot. It stung like hell but it was over quickly and I went home.

Day 3 we got out of the house early for our housecleaner. I ran some errands, grabbed breakfast, and hung out at my mom’s house for a while before heading back home. That night it hit me.

For the next several days I fell into a cloud of deep, deep fatigue and bone pain (a side effect of the Day 2 shot.) These would prove to be the worst days. I got up to eat a tiny bit, drink water, do a long mouth care routine, and pee. Otherwise I slept. And slept. And slept. I didn’t poop for three days. If you texted me then, I likely did not respond. I likely did not even read the text. I remember that Tom and the girls went about their days all around me, while I sat in what felt like a catatonic state. And it really messed with me. I felt like I was becoming addicted to sleep, like I preferred to slip away instead of check in with life and reality. I could not remember that this was temporary, that I would come out of it. It was terrible.

I think I started to come out of it on Day 7. I pooped, I went outside, I walked around the house. I started responding to people. Then the diarrhea started and lasted for five or six more days. I lost all the hair on my legs, a rash broke out on my face, everything was too loud, then every food started tasting like metal. I visited with a Palliative Care nurse (where I cried literal blue tears.) Still, I signed up for every online class I could take with Hope Connections and Life with Cancer. Yoga, Qi Gong, Tai Chi, Music Therapy, Breast Cancer Support Groups. I painted, knitted, crocheted, and read. I repeated affirmations, I meditated. I listened to Mel Robbins tell me to box breathe and change dread to uncertainty. I repeated the mantra, “Be where your feet are.” I attended Rosary Club and Nutrition for Chemotherapy. I met with a Social Worker and had genetic counseling. But I could not write. Every attempt ended in frustration a few minutes later. I did not know where to begin, how to make up for the lost time since I’d last posted. So those are the broad strokes of where I have been. 

Today is Day 15 and I have been feeling so much better for days now. I have been running errands, driving, cooking, visiting with people. I went to church and to trivia and bought Christmas gifts and prepared for Tom’s birthday (tomorrow!) I feel like I have lived a lifetime in the past several weeks. And while I am physically feeling better, I am mentally and emotionally spent. I was only diagnosed one month ago and I’m looking at all that has happened and I’m crying all over again because it is so, so much. And Jenny, my scalp is starting to hurt, just like you said. My hair is falling out.

I’m realizing now that this post would be too long if I also continued to reflect on the time that has passed, so I will save that for later. It is abundantly clear to me that surviving this cannot be done simply by “being strong.” Rather it requires deep work and commitment on a level that has not been asked of me, that I never even understood until now. It is humbling and intimidating and terrifying. And. I have witnessed so much beauty that it’s difficult to even describe. More to come on that.