It’s been awhile since I’ve written. I’ve wanted to write. I’ve scribbled thoughts here and there, but I couldn’t quite sit down and face re-experiencing the last couple of weeks.
Every now and then I rub my hand over my head. There’s stubble. When will it fall out, I wonder? I could have had my hair for another week, I think. But I think it’s better that it’s still there, still growing. I’m getting used to it. I’m getting accustomed to seeing my reflection, to recognizing my new shadow.
Every story this year begins with “If someone had told me at the start of 2020 that…” Mine’s a little different. Even if I knew there’d be a pandemic, never would I have thought that I’d have cancer. That I’d be ending this year with chemotherapy. Although three of my four grandparents had some sort of cancer, I’m the only grandchild with the disease. It’s not a familial expectation. Yet, here I am, with a bald head, a compromised immune system, and a countdown to my next treatment.
The first one wasn’t so bad. I didn’t feel anything as it was happening. One of the advances I’ve been hearing about when people tell me that “cancer is no longer a death sentence” is that the side effects aren’t as bad as they used to be. After experiencing the ones I had, even after the first and what will be the mildest treatment, I feel deep empathy for those who did not have those mitigations.
Jim dropped me off a little after noon the Monday before Thanksgiving. I had a bag stuffed with stuff. It was so stuffed, stuff was coming out of it. Every item in it a gift. A blanket. Puzzle books. A book and magazine about Frank Lloyd Wright. A coloring book and colored pencils. A prayer shawl sent by a woman I’ve never met from a city where I lived thirty years ago. Lemon drops, lip balm, hand lotion. A stuffed barn owl and a pink bear. A candle activated by water. My journal and my very special pen. I clutched them close and waited for someone to check my name and birthdate before ushering me back.
The first nurse weighed me. A little high, but I’d been told to eat what I want, when I want, so I was OK with that. She took me back to my own private room with a big chair and a nightstand. A curtain provided privacy. The first thing they did was take my blood. Even though I’d picked up a prescription for Lidocaine, I hadn’t applied it before we left, thinking there’d be time once I arrived. There wasn’t. She gave me an ice pack to numb the skin over my port, the port that had been installed above my heart nearly a month before when Dr. B. removed several lymph nodes. She decided I needed the longer needle. Greeaaat. She poked and I mewled. God it hurt. First she had to flush the port and then she took a couple of vials of my blood. It came out beautifully, she said.
While she took my blood, J, my Nurse Navigator, pulled up a stool. I finally got to meet her! For the next hour, as we waited for the results, J walked me through what would happen. First they would inject anti-nausea and other medications, those mitigating drugs that would help my body deal with the drugs that kill any cancer cells. I’d be hooked up to an IV and could relax. That downtime is why I was told to bring items to keep me busy. She gave me another bag, a sturdy canvas multi-colored striped tote donated by AT&T Pioneers. It was filled with goodies, including a soft scarf in shades of purple knitted by J’s own mom.
I only cried a little bit.
She brought me water and crackers, and a sandwich of white bread and turkey. (Note to self: bring your own sandwich next time.) She brought me wigs.
Eventually I was on my own. I tried on the wigs. I hated how I looked in each one. “THAT’S NOT ME.” I took pictures. Posted them on Facebook. People loved them. “You look like your mom!” I felt better.
The floor nurse arrived and inserted the needle for Adriamycin, or DOXOrubicin, into my port. She slowly, carefully plunged the needle, injecting the red liquid into my veins. If it leaks, it can cause skin necrosis – tissue death. She followed this with an IV of Cytoxan, or Cyclophosphamide. I waited for the bag to empty. A couple of times I had to roll my drugs with me down the hall to the bathroom.
This was all so new. So foreign.
Jim picked me up and settled me in on the couch while he made dinner. I felt fine. We watched The British Baking Show, I think, and we ate a pile of roasted potatoes and a whole box of mini-corn dogs. The ketchup tasted metallic but oh, those corn dogs were delicious. When would the side effects begin?
Soon. I went to bed early. I didn’t sleep well. I woke up several times during the night, so very thirsty. Jim had set up a pitcher of water on the nightstand and a bucket on the floor, just in case. I needed the pitcher. I did not need the bucket. I peed red.
In the morning I took my anti-nausea medications, as prescribed. Take them no matter what, I’d been told. J called to check on me, and besides pressure on my head and slight swelling in my fingers, I was OK. I was constipated, and then I wasn’t. I got scared. Nauseous. When I wasn’t in the bathroom, I was in bed. I couldn’t think. I couldn’t really speak. Words escaped me. Me. Who makes my living with words. Whose passion is stringing words together. I’d try to communicate and it wouldn’t work. I couldn’t think of some words at all, or the wrong ones would come out.
Forget the increasing nausea and the consuming fatigue. This was my nightmare.
As the day wore on, my discomfort and fear grew until we needed to call J. She was relieved that I hadn’t vomited and was able to drink water, but shortly after we hung up she called back and told Jim to bring me in. I needed hydration, and I needed it immediately.
I blame the corn dogs.
Jim put the bucket at my feet and we drove to the cancer center. I had an appointment that afternoon anyway so I could get a shot to boost my white blood cells. An ice pack numbed the skin over my port again. I mewled. A young nurse with black sidewalls and a white mohawk checked the IV bag to make sure the liquid was draining properly. He returned when it was completed to give me my shot.
Back home, I crawled back into bed. I woke every couple of hours and noted each time I took my medicine. I emptied my pitcher, again. I still didn’t need the bucket.
Through the fog, Mom and Dad arrived. They’d driven through the day, stopping only for food and gas. I could tell by the looks on their faces that I didn’t look good. More importantly, I could tell by the looks on their faces that they would stay as long as we needed.
Wednesday was better. My brain began functioning again. My body began functioning again. Slowly, but it functioned. On Thanksgiving, mom and I did the whole feast: turkey, dressing, mashed potatoes, sweet potatoes, and green beans. Jim made rolls. Mom made pies. She kept urging me to slow down, take a break, relax, don’t push myself too hard. “I’m fine, Mom. Really. I’m fine.” But I’m stubborn, and she’s my mom, so she kept checking, and I kept reassuring.
It was a beautiful, wonderful, delicious day. We talked to Jim’s parents. We talked to my brother. We talked to my son and his girlfriend. Occasionally I’d start crying.
Thanksgiving was my last day with hair.
Despite everything, I went to bed more grateful that evening than I’d been any other Thanksgiving of my life. My gratitude is boundless. I find myself repeating that I do not have the words to express how grateful I am. That has nothing to do with chemo brain and everything to do with everything else. I’m even grateful that I found out I have (had?) cancer, because I found out early enough that I feel the treatment more than I ever felt the disease (which is easy to do since I never felt the disease). I’m grateful for big things, like the love and friendship that’s been showered on me, and silly things, like discovering I have a nicely shaped head.
That was a fear, you know. Shaving my head and discovering it’s wonky and misshapen. Considering what goes on inside, I wouldn’t have been surprised.
I was grateful that Dr. S. and J were right and I could enjoy Thanksgiving dinner, despite having my first chemotherapy treatment three days before.
It’s something I never thought I’d say or do – does anybody ever expect that? – but I now have experienced chemo. I’ve experienced more this year than I ever could have anticipated. And for that, I am grateful.