Write After

September is Childhood Cancer Awareness Month.

Last September, I didn’t know this. Last year at this time, we were just at the tip-top edge of a cavernous depth.

My daughter has metastatic papillary thyroid carcinoma. She was eight years old when we got the official diagnosis. Ultrasounds, consults, CT scans, and appointments were just starting to kick down our doors at this time last year.

When we got the diagnosis on Friday, October 13th, I leapt off the planet. I plunged into space. I untethered. Darkness and no oxygen for a long time.

I remember telling my husband after I got the news from the surgeon. My husband couldn’t listen into the call at that moment because he was already on a work call. But when he came up, I told him what the doctor had said, and while I told him, I noticed I’d lost control of my right arm. It was shaking and spinning around wildly, and I watched it like it wasn’t mine. I couldn’t feel it. I couldn’t make it stop.

I spent a lot of time on the floor in my daughter’s room. And on the floor in my room. The kids were at school that Friday, so I had free reign of the house to find spaces to sob.

To sum up what can’t be summed up, my daughter had her thyroid and most lymph nodes in her neck removed in a nine-hour-long surgery on October 30. She spent a week in the hospital and another several days at home, recovering. Her voice was very different for many weeks, and she has a long, thin scar across her neck. She had radioactive iodine ablation therapy in January of this year, and we have learned there is a possibility her lung metastases are not responding to it.

We have a whole-body scan coming up this week.

And through all this, she has been asymptomatic. She feels well and seems healthy. And she doesn’t really think about appointments that are too far in the future. She tells everyone that she leaves all the worrying to me. She focuses on school, friends, and asks me to sign her up for gymnastics.

There is a reason I didn’t write here after I learned about this. Not only did I jump off the planet, for a while, most of the things that were not absolutely necessary simply didn’t get any attention. We kept all the kids’ activities and school and daily lives as normal as we possibly could, including my daughter’s. But my life was — is — different. I walked around like a barrel that had just lost its floor, letting all its insides pour out all over the place. The outside was there. I looked like I was there. I talked like I was there. But I lost everything for many months.

Including writing. Almost especially writing. I just couldn’t do it. Not that I had time for quite a while. But in February, after her radiation treatment and when we were in the “wait and see at the next scan” phase, because she seemed so well I considered writing again for the first time.

But I didn’t.

To write fiction again would have been to dismiss and discredit all the pain we’d lived through. Somehow, if I were to write again, I would be erasing the months of initial cancer treatment. I would be pretending that I could go back to how things were. I would be forgetting about the cancer. I would be living life like it had been. I couldn’t do that.

So I didn’t.

Frankly, I couldn’t read, either, anything other than medical articles or texts. I watched TV and had insomnia. The first words whispering in my head the moment I woke up — at 2:00 AM or 6:00 or anytime — were “pediatric metastatic papillary thyroid carcinoma.” There were some nights I didn’t sleep at all.

I definitely didn’t write. I certainly didn’t create. I spun around in space for months.

Now, though, in this Childhood Cancer Awareness Month (and Thyroid Cancer Awareness Month), some of me is filling back in. My daughter is not cured. She likely never will be; this will be a chronic cancer and even if she does show no evidence of disease, the likelihood of recurrence is pretty high. She has other genetic complexities that are complicating her treatment. This is not going to be a care-free life, if it ever was. But she remains energetic and I am confident in her care team. I also prepare for all the possibilities, and so this week leading up to her scans is pretty hard. Because she feels well and I trust her doctors, I have come back to Earth in increments. I am re-assembling myself in some ways, intentionally and not. And I’m writing. Some. As I can. Stories about things that aren’t real. Stories made up, created. Stories that may be horror. Or just pain. Or maybe stories about ghosts drinking coffee.

There is no way to cut out being a cancer parent. There is no way to get rid of it. No medicine will vanish this. This is me, now. I think everything else will have to figure out how to fit around it.

I hope I can keep writing, even if it is just for the new me.