Chemo in a pandemic

The door to the cancer center slides open without touch. Just inside sit two masked people wearing scrubs. They stop us with questions.

“Any fever? Any cough? Have you traveled outside of the area in the last 2 weeks? Have you come into contact with anyone that has been diagnosed?”

I shake my head no at every question. They offer us hand sanitizer, a small squirt into our palms, and we head to the elevator.

“Don’t touch the button,” I warn her. “I’ll do it.”

She likes to push the buttons herself, and I see her pout behind the mask. It is blue with a paisley design, hooked over her tiny ears. Above it, her hazel eyes gleam. She is so pale and slight that it makes my heart ache sometimes just looking at her.

We step into the elevator, and I use my elbow to push the “2.”

“Going up,” the elevator intones.

As the car rises, I stare at my daughter’s back. She is quiet today. From this vantage, I can see the huge bald spot on the right side of her scalp. The rest of her hair has become frizzy, broken, and stands out in a golden halo from her head. I cannot resist the urge, so I reach out and cup the back of her skull in my palm. Warmth seeps into my hand, and I marvel at how fragile she seems. And how strong she really is.

“Mooooommmmmy,” she laments.

The elevator doors part, and we disembark. The waiting room is empty. Not just of people— but of everything. The art tables are bare. The plastic container of free hats and scarves and port pillows is absent. There is no longer a Keurig or coffee pods or cups. Kara, the Arts for Life volunteer, isn’t here doing her usual craft projects to entertain and distract the kids from the tedium and pain of a chemotherapy appointment. Instead, there are carefully prepackaged crafts behind the desk.

The receptionist offers me the box and allows me to choose one. Behind her mask, I can see that her face is pinched with worry. I only touch the one that I select and avoid brushing her gloved hands. Today, it’s paper cutouts of acrobats, a straw to make a trapeze swing, and colored pencils to decorate them. We start coloring.

The office is eerily quiet. Typically, there are one or two other kids and families waiting for appointments, an Art volunteer, and the social worker bustling in and out. Today, it is just us and the receptionist. She sits behind glass, typing away at the computer and avoiding eye contact.

Outside, the day is grey and overcast.

The inner door swings open and a nurse we haven’t dealt with before calls “Hazel?”

We rise, put the trapeze artists back in their bag, and follow to the triage room. It’s a routine my daughter knows well. Obediently, she removes her shoes and stands on the scale, then moves to the wall to have her height measured. The blood pressure cuff next, then the pulse oximeter, and the thermometer. Each item used is carefully placed aside to be thoroughly cleaned before the next patient arrives.

“Any cough? Fever? How is she doing?” The nurse asks.

I explain that she has been doing well other than a possible sprained ankle from going down the slide wrong. The nurse nods, makes some notes, and then leads us to the access room. Again, the halls are quiet. No laughing or crying voices echoing, no nurses moving to and fro.

We see the Child Life specialist, Cole, one of Hazel’s favorite people, and wave. When she stands to come towards us, I shake my head vigorously.

“We’re trying to minimize interactions with anyone that aren’t absolutely necessary,” I tell her apologetically.

She gives me a sympathetic smile and resumes her seat.

“I understand completely.”

Hazel wants to know why Cole can’t come with us while she gets her port accessed. Cole has been with us since Hazel’s diagnosis. Port access is probably the scariest part of chemotherapy for most kids. Hazel has a nickel-sized lump on her upper left chest. That bump is a port, just under the skin. The port tunnels subcutaneously then dives down under her collarbone, allowing access to a deep vein. Anytime she needs a blood sample taken or chemo administered, a needle can be introduced into it and left in place until no longer needed. It’s not a comfortable process. Blessedly, it is quick.

Over the weeks since her diagnosis, we’ve developed a strategy. She sits in my lap and leans back against me, her fuzzy hair dusting my face. I put on a Calm podcast, usually The Little Mermaid or Alice in Wonderland. The nurse carefully scrubs the area to remove dirt and bacteria. We use “Freezy” spray to numb it. Hazel requests her “scents.” We open a small tub of lavender essential oil. She inhales deeply. The nurse counts “1, 2, 3,” and sticks the needle through the skin. Today’s nurse isn’t one that we’ve had before, and she’s a bit more awkward. Her technique seems sluggish. Hazel squeals in discomfort.

That part is over quickly.

Hazel then gets a stick of gum. Oddly, of all things, she hates the infusion of saline into her port the most. She says that it tastes terrible when it’s pushed into the vein. A friend, suffering from stage 4 breast cancer, told me that it is a horrible taste that stays with her for hours after treatment. Chewing gum can mitigate the flavor.

The nurse then collects blood samples, cleans the port one more time, and places a sterile cap over it.

I watch obsessively as the she handles the line and the injections. Is she being as clean as possible? Did she change her gloves again? Did I hear her cough? Gloves are hard to come by these days. Are they having shortages? Did she scrub the port again before putting in the saline?

We are moved to the last room, again through empty hallways, to await chemotherapy.

“Where is everybody?” I ask. “Not sick, I hope?”

“No,” the nurse shakes her head. “We are just keeping as many people off as possible, to minimize exposure.”

The chemotherapy room is a private place. It has a couch, a heated recliner, and a bedside table. There’s a TV with a DVD player that we never use. Except for the medical equipment—an infusion pump and a blood pressure machine—it might almost be a normal room. We have a view of the hazy blue mountains over the parking deck. Today, they are mostly shrouded in clouds.

Normally, we are active while we wait for chemotherapy. Cole, the childlife specialist, entertains Hazel with science projects. Last time, it was a vinegar and baking soda volcano that Hazel packed with purple and red glitter. We often walk the halls, peeking in and saying hi to other families, or we raid the snacks. Sometimes we return to the waiting room to finish an art project. Today, we simply wait in our room quietly. No one enters. When Hazel requests water and a snack, I use my elbow to pry open the door, grab some crackers and water, hand sanitize again, and bring them to her. Cole passes by and waves at Hazel through the frosted glass.

“Mommy, why can’t Cole come in?” I explain again about the virus and maintaining distance from people when possible. She is disappointed. I can see her lips turn down behind her mask.

“I’m sorry, sweetie,” I say lamely.

Our oncologist comes into the room. She sits back from me.

“Her counts look good,” she tells me. “Any complaints?”

As we talk, she reaches for gloves.

“Any shortages yet?” I ask, eyeing the bright purple Latex.

The oncologist shakes her head. “Not yet.”

It’s a fear that I can’t shake. As worldwide cases reach half a million, hospitals are pushed to capacity, the economy grinds to a halt, and supply chains are broken, will the critical protective equipment be available? Will my daughter be able to receive the chemotherapy that will save her life? And what about the drugs? Chemotherapy drugs become difficult to obtain all the time. Several months before the virus, a staple of her regimen, vincristine, became scarce. Decisions were made. The adult oncologists shunted their supply to the pediatric side. Note this was before a worldwide pandemic.

The oncologist examines Hazel, touching here and there gently, looking in her mouth and her ears. As she does so, she talks to me.

“I’m in a giant group of oncologists online. We’re all over the world. We’ve had some positive in pediatric cancer patients,” she says, “but all of the kids have done fine with it.

I feel a slight twinge of relief. She finishes her exam.

“You look great!” she pronounces. Hazel’s eyes tilt upwards at the corners, and I know she is smiling behind her mask.

After she leaves, our nurse returns with a bag of yellow liquid, methotrexate, and a clear injection, vincristine. She sets up the infusion pump and whirring fills the room. Hazel watches Toy Story on her iPad, and I scan social media. Every now and then, I check her face to see if there are any signs of distress. None seem apparent.

I asked my friend with breast cancer what having chemotherapy is like. I haven’t experienced it myself, and so I have no idea what my child suffers. She seemed to think about it before telling me, “…it feels like your body is burning from the inside out. After a while, it gets very hard to deal with…There is pain that is hard to describe.” I cannot stand to think of my daughter in pain that I cannot alleviate, but isn’t that life? We can’t protect our children from pain. We can only be there for them to offer our love.

In thirty minutes, we are finished. The nurse comes to de-access the port. Hazel hates having the dressing removed, so I douse it liberally with an adhesive remover and gingerly peel it from her skin. She yelps when I pull the skin on her neck.

“Mommy, I’m scared,” she looks at me with huge, damp eyes.

“It’s ok. This is the easy part,” I remind her. The nurse reaches over my shoulder and gently pries the needle out of her skin. Another yelp. The band-aid today is Minions.

We gather our things and walk down the silent hallway, waving at the oncologist as we pass.

In total, we have interacted with only two people during our visit, and Hazel’s white blood cell count is strong. Still, my skin feels prickly for the rest of the day, as if I can feel virus particles replicating, and I wonder, “were we infected?”

Published by Catherine Ashe

I am a mother to four children, one gone before me. I write to release the pain.

4 thoughts on “Chemo in a pandemic

  1. Oh, Cat! I didn’t know. I told Nancy I missed you, and she mentioned that things were even tougher for you now and told me about this blog. I cannot begin to imagine what you’re enduring or Hazel’s strength to keep going so bravely. This is beautifully written. Please make it into a book with drawings, photos. You will help thousands of parents and children going through the same thing. Your descriptions are so vivid. Your questions and concerns are deep, and they’re the ones I would imagine any family in this situation would want to ask. Cindy

    Like

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