Josie Leavitt

Everyone’s got something to say about the cancer experience, but not all comments are helpful. 

Details about a loved one who experienced or died from the disease, an unsolicited opinion about what course of treatment is best — these kinds of remarks can create unnecessary stress for patients during an already challenging time.

At a May 31 conference on the value of cancer stories hosted in Chicago by 

, cancer survivor and comedian Josie Leavitt discussed the way such comments affected her when she was in treatment.

By recounting her journey, she hopes to educate the friends and loved ones of patients about how to listen, understand the cancer experience and discuss it without judgment.

I found out I had cancer in the parking lot of Lowe’s. Ellen from the breast care center called me and said, “Are you in a place where you can talk?” I looked around and I said, “Yeah, sure,” and she just launched right in and said, “You have invasive ductal carcinoma.” I wanted to start writing things down, and the only thing I could find was my old car lease and a faded purple Sharpie. All I remember is circling the words “invasive ductal carcinoma” with an arrow as a note to myself, and I wrote: “You have this.”

When you find out you have cancer, a lot of things happen. One is that you tell people and, nine times out of 10, they don’t respond to you. They say, “Oh my God, my mom has cancer” or “My dad died of pancreatic cancer” or “My grandma’s a 15-year survivor.” I’m like, “I don’t care. I don’t know these people. You’ve now hijacked my cancer story, and now I’m comforting you about people I don’t even know.” Don’t do that. I had a therapist who said that just because there’s an empty space and silence doesn’t mean you have to drive a truck through it.

The next thing that happens is that there’s a lot of arm grabbing when people ask, “How are you?” And I think people do that because they actually want to make a connection but also want to let you know that they realize you’re not contagious. And some people grab your arm and they say things like “God, you’re handling this so well,” and that begins what happens with cancer that no one talks about, which is that you are judged on how you do cancer. Everyone has an opinion. Most people share it with you; smart people don’t.

I lost my hair and was at a coffee shop where I’m from in Vermont, and bald is not a style choice for 55-year-old women there, so when I walked in bald as a cue ball, I basically had a sign over my head saying: “Going through cancer treatment.” The woman ahead of me in line said, “God, I would never do chemo.” You know why? She said that chemo is poison. What I wanted to say to her is: “Of course we know it’s poison, because they tell us.”

You can’t start chemo without going to your chemo learning class, where they scare the bejeepers out of you. I remember that my girlfriend and I were sitting in chemo learning class just increasingly horrified, and the nurse said, “Oh, by the way, you can’t exchange bodily fluids for 48 hours after the infusion.” And I guess we had a look on our faces, and she’s like, “No, no, you can cuddle.” And we weren’t crestfallen — we were horrified, because think about what that means: I cannot kiss the woman I love because something inside of me will make her sick. I know it’s poison, woman in the coffee shop.

The poisoning starts so benignly in the chemo suite in the blue pleather chair — ass down, arm out, IV in. And you can see the bag and know it’s poison, because it says so. It says “biohazard,” with that symbol that you see in dystopian novels and nuclear power plants. Then, underneath it, it says “dispose of properly,” and every single round of chemo I thought, “They’re probably not thinking ‘in a human vein.’” It’s so slow &mdash; they hang the bag and it goes drip, drip, drip. I turn to my nurse and say, “Is there any way we can speed this up?” and she says, “Any faster and you would die.” I know it’s poison, woman in line at the coffee shop. I don’t need you telling me.

So, it drips, and it’s so slow, and you’re waiting for it to hit your bloodstream, and it snakes its way through the tubing and finally hits your arm and transforms from a clear fluid to what feels like silver alloy gumming up everything. I can feel my stomach turn to granite and my feet getting cold and I just think, “Wow, when am I going to feel like me again?” Because you don’t feel like you instantly. I want to say to the woman in the coffee shop: “Sit through this crap for an hour and a half, and then let’s talk about poison.” Then they hang a second bag, and within a millisecond my mouth turns to metal, where it stays for 10 days, making me eat with plastic because I can’t handle the metallic taste. I know it’s poison; I don’t need you telling me it’s poison.

I was on a 21-day cycle; every 21 days you’re back in the chair. Why? Because you want to live, that’s why. Yes, it’s poison, but you know what else is poison? Cancer. You have made a choice, and it’s no one else’s business to comment on that choice of yours, but you don’t say that in the moment.

I found myself just so angry, and I asked myself, “Why am I justifying why I’m doing chemo to some complete stranger?” And I didn’t.

What I wanted to say to her is: “Here’s why I’m doing chemo — because it reduces my risk of recurrence by 50%. And, truthfully, I’m doing chemo to outlive you.”

What I really said to her was: “Excuse me, I think it’s your turn to order.”

Josie Leavitt is an award-winning stand-up comic and storyteller based in Vermont. She received a breast cancer diagnosis in early 2018 and turned her treatment and subsequent recovery into a one-person show, “So This Happened: A Comic Confronts Cancer.” Leavitt speaks throughout the country to patients, providers and caregivers about ways we can make the cancer experience better and where to find unexpected laughs.

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