Episode 4: The Five-Month Chemo Countdown Begins
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Health

Episode 4: The Five-Month Chemo Countdown Begins

It's just hair, but it's not. It's youth, femininity, vitality. It's gone. It's a fucking loss.

This is the fourth entry in a multi-part series. Read the first entry here, the second entry here, the third here.

I barely sleep the night before chemo but it turns out I have nothing to worry about: Other than a brief bad reaction, it's painless and I end up sleeping through most of it. I get a private room for my first treatment, which is for the best because I have four friends with me. We are a party. Lis even brings champagne flutes, sparkling water, and penis straws from her bachelorette.

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The nurse talks us through what the process will be like. All of the names sound the same to me—toxic. They've forgotten to give me steroids ahead of time. Even though she plays it off, it adds to my anxiety. The pharmacist comes to explain each of the medicines I'll take at home, including one that has a side effect of bone pain. "Like dengue fever?" I ask.

"Did you have dengue fever?" Yeah. "Oh, gosh, no. You'll be fine."

I don't realize it, but the nurse has already given me an extra strong dose of Benadryl. My head bobs half-consciously like an exhausted toddler refusing to succumb, but I guess I fall asleep anyways because the next thing I know, I'm trying to stand and everyone jumps up to catch me like I'm going to fall. Maybe I am going to fall.

Later we snack, watch a show, play cards. It's a long day—almost seven hours. My nurse leaves for the day.

"What are those?" the replacement nurse asks, pointing to the straws. You think she'd know. ***

They warn me that I'll start to feel worse when the steroids wear off in a few days. And they do keep me from being sick at first, but they make me feel weird. Red, anxious, irritable. But then I'm sick and I really don't like it. I'm torn, writing this now, between my desire to make something true out of this and my distaste for grief porn. I don't really want to tell you about the bad part. The worst of it is not knowing how long it will last. I have almost five months of chemo. It can't all be like this, can it?

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Remember the first time you got your heart broken and no one in the history of the world had ever felt as bad as you and it seemed like it would never end but then it did? Slowly and all at once at the same time, surprising you with just how fine you felt one day? It's like that.

***

"What's going on with your body this week?" the massage therapist asks. "Well, I started chemo this week so…"

His eyes well up. He's shocked, as if I have slapped him across the face with my news.
"Oh my god! That's terrible! I feel so terrible!"

"I'm alright. It's not that bad."

He asks for a hug at the end. ***

I'm fascinated by how people talk about disease. And I mean mine, but I don't really want to call it "mine" because I don't want to own this shit and in my mind it's all temporary. It doesn't belong to me.

Attack this shit.
Kick cancer's ass.
You're going to beat this.
Fight.

I get it, or I think I do. But I don't feel like I'm fighting some epic war. If anything, I'm learning to slow down, to be passive, to receive. Mostly what I do is rest. I take a lot of naps. My battlefield is my bed. Or the couch. Or the passenger seat of your car.

People talk about how angry I must be and maybe I'm in denial, but I don't feel angry. It's just the thing that's happening right now. It is totally fucking surreal and also surprising how quickly something can be your new normal. There are good days and there are bad days, but that's true for everyone. In a weird way, I feel happier. Nothing matters and everything matters and oh god that is so cliche but maybe it's cliché because it's true. What if the worst thing that ever happened to you…wasn't? What if it was the best thing?

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I think of my friends with chronic illnesses like diabetes and Lyme disease and Crohn's. There's no right or wrong way to experience your disease, but it seems to me that they're not walking around like their mortal enemy is living inside them. ***

I put off talking to everyone's friend/cousin/mom/co-worker/fill-in-the-blank with cancer. Actually, I have yet to talk with a single person who has cancer. But then a friend introduces me to someone at BAYS (Bay Area Young Survivors) and we're on the same text message chain so I can't really ignore her.

We make a date for a call and—you'll never believe this—it's really helpful. She's my age, give or take a year, and funny and cool and we have a very similar diagnosis. I ask her questions I didn't realize I had. We talk about side effects and she says, "You don't have to suffer." Which is true for all of us, right? At the events I run for Women Catalysts, I'll sometimes ask the audience: How many of you love to help other people? Everyone raises their hands. Then: How many of you like to ask for help? Crickets. Maybe one or two out of a hundred people will raise their hands. It's hard to ask for help. It's even harder to accept it.

I always thought my biggest fear was that no one really loves me. Or, worse, that I am unloveable. But I see now that my only barrier to love is my willingness to receive it. That's a tough pill to swallow, and I know because I have to swallow a lot of pills these days. ***

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On the strong recommendation of a healer friend, Paula and I go to Pine Street Clinic in San Anselmo. They've been doing integrative care that works with your Western medicine treatment since the year before I was born. Before we go, Paula sends all of my test results and treatment plan.

The first thing he says is, "You have to let people do things for you. Just because you can do something yourself doesn't mean you should." How did he know?

He tells us that in Chinese medicine, generosity is a learned behavior, so giving people the chance to practice is a gift to them. Okay. Then he describes each chemo cycle as having three distinct phases: treatment, detox, and recovery. Phase one starts the day before treatment—I'm on a three-week chemo cycle, so for me that's day 21—and goes through day three. For this part, I'm to avoid carbs and do a reduced supplement regimen because they can interfere with the chemo.

Phase two is days four through eight. This is the tough part, but it's only five days. He wants me to get at least 1200 calories, 50 grams of protein, and 60 ounces of water. When I'm in this phase, the very idea of having to get 1200 calories down is enough to make me cry. Do I have to start all over when I throw up, I wonder.

Phase three is days nine through 20. The longest phase is thankfully the phase during which I feel the best. His advice is to use this time doing things that make me feel good with people who make me feel good, which seems like sound advice.

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We talk about exercise. From an immune-strengthening perspective, it's good to do something new. Not just go to classes, but really learn it. He recommends swimming and Tai Chi for me. But not regular swimming, which will stress my nervous system. There's a guy in Marin who will teach me how to swim like a marine mammal. I am not even joking. Take a minute.

He says that halfway through treatment, I should start thinking about what I want to do after. "Like what?" I ask.

"Well, two months to recover on the beach in Hawaii might be nice," he says.

I read Paula's notes after and see she wrote two weeks, but I'm positive he said two months.

***

My most enduring side effects are fatigue, indecision, and general mental fogginess. It takes me weeks to write this. Don't ask me what I want to eat because I don't know. Paula and I go to swim class and, while there's very little mention of actual marine mammals beyond their lack of knees, the teacher is a total delight. He's all about one thing at a time and feeling good. It feels great. Exactly two weeks after my first round of chemo, I start to lose my hair. At first it's just a few strands. My friend Kristina has offered to cut it for me so we meet for tea and talk about transitioning with a pixie cut. But as the week goes on, a few strands have turned into large clumps. I'm not concerned about being bald, but having your hair fall out is a real mind fuck. I want to go swimming but am mortified at the prospect of my hair coming out in the water.

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By the time I make it into Kristina's salon a few days after tea, I'm not leaving the house without a hat. We decide to skip the pixie and go straight to buzzing it all off. I'm not expecting it, but I start to sob. It's just hair, but it's not. It's youth, femininity, vitality. It's gone. It's a fucking loss.

And then I feel fine. How strange that I had no idea what the shape of my head was. The texture is both spiky and soft and when I shower, I'm shocked by the sensation. When I lie down, my head feels strange on the pillow. Like the receptive end of velcro, the individual hairs are reaching while collectively they push away. It takes awhile to get used to it, but I do. I even like it. ***

I meet with my oncologist the day before round two. She has good news: My lab work looks great. Then she does an exam and has even better news: The two larger tumors have already shrunk considerably. She tries to pretend that she's cautiously optimistic, but she seems downright giddy.

For round two of chemo, we don't get a private room. "That's fine, but we're rowdy," I warn the nurse. And we are.

This story originally appeared on Medium. Stay tuned for updates from Lindsay Jean Thomson on Tonic.

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