Listen: High Risk

What it’s like to live through the pandemic with a cancer diagnosis

On the latest episode of the Social Distance podcast, staff writer Caitlin Flanagan talks with James Hamblin and Katherine Wells about coming to terms with the pandemic after living with cancer for 17 years.

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What follows is an edited and condensed transcript of their conversation.

James Hamblin: What have you been thinking about as the stay-at-home orders have come in?

Caitlin Flanagan: I’ve been in a sort of particular situation: I have Stage IV cancer, and I was first diagnosed 17 years ago. It’s an incredibly long time to be alive and well, given that it was a very aggressive form of cancer. When I first got diagnosed 17 years ago, we were just so shocked. I was 40. I had twins. They were four years old. I was living the part of my life I had always wanted to live: being a mom of young children.

I just went in for this routine test, and [the doctor] said, “You’ve got aggressive breast cancer.” And then he just looked at me and said, “You can’t drive home. I need to call your husband. I need to get you a taxi.” And he was absolutely right, but I had this animal instinct to get away from him and to get away from the office and for him not to call my husband or anyone. I just had this sense: I’ve got to contain this information. I’ve got to get away from here.

Katherine Wells: Was this a moment where your reality changed in an instant? Was it that kind of feeling?

Flanagan: I died that day. Part of me that was there before that day ended. But then a new part of me came back, and I’ve lived a really, really good life. I’ve raised my kids. I’ve done wonderful things. I’ve traveled all over. I have lived this 17 years bathed in love. But the trauma of that day was that, apparently, I’m not the one who decides what happens to my body anymore.

Hamblin: What you’re describing overlaps in some ways with what we’ve heard from some people who’ve gotten COVID-19. Right now, everyone is being told that they’re vulnerable to a potentially fatal disease that you might even feel asymptomatic with and be spreading. And there’s this uncertainty that a couple of months ago was not on our radar at all.

Flanagan: It’s one of the reasons that I did not take, in the very beginning, all the news about COVID-19 seriously at all.

Wells: When did you first hear about it? What was your experience of realizing that this was happening?

Flanagan: You know those old-people cruises called Viking River Cruises? We had been hearing about COVID-19 spreading and that cruise ships were a bad place for it. I went for an infusion, and I asked the nurse, a very smart, skilled chemo nurse, about it, and she said, “Oh, don’t worry about it. It’s the flu. You’ll take some apple juice, you’ll take a few days off if it’s COVID.” And one of my things with cancer is the minute you hear about something you want to do, if it is at all within the realm of the possible, you’ve got to do it now. We had paid to go on the cruise. I wasn’t taking it seriously.

In the beginning, when they were saying it maybe had a 2 percent fatality rate, and then somebody said 1.5 percent, I started laughing because when you have Stage IV cancer, and someone tells you this new illness could have a 1.5 percent mortality rate, you’re like, “Wake me up when it gets into double digits, then tell me there’s a problem.”

Then I was sitting outside, I’d just done an interview for work at a restaurant, and I looked around and I was like, “Gee, there’s not a lot of cars on Ventura Boulevard. It’s usually packed midday.” And the restaurant was kind of empty. And while we were sitting there, both of our phones were going crazy with things being canceled for each of our lives. And all of a sudden I just got this sense, like in a horror movie, of I need to get home right away. It was since then that I’ve taken it very seriously, and it’s been very, very frightening. The more I understood it, the more I understood it would kill me if I got it, because one of my many side effects from different cancer treatments is right now I have sarcoidosis and my lungs are very impaired.

Wells: How have you been channeling that fear?

Flanagan: In the beginning my fear was so huge because I felt like [the virus] could be seeping underneath the front door. It could be coming in around the windows. It felt so frightening. But then as time progressed and I realized, okay, it’s a virus; the main way you’re going to get this virus is you’re going to get sneezed on or coughed on, so you need to avoid anybody that’s not living in your house with you. You need to be in a mask. And anytime you go out, you need to be really careful about surfaces. I was like, Wow, when I had cancer, nobody gave me some commonsense things that could really help me not have cancer. Not that I’ve become relaxed around it, but I’ve become a lot more realistic and a lot less frightened of it than I was at the beginning.

And it wasn’t even so much a fear. It was that 17 years in, the incredible public-health failures in the United States of America, that’s what’s going to kill me? There are certain faiths that you have in the United States of America that certain things are going to work. That huge public-health systems, the [Centers for Disease Control and Prevention], the surgeon general are going to work, and they’re going to work at the right time and that there’s going to be this seamless flow of information, of honest information, back and forth between public-health authorities and us, we the people. And then to see the president of the United States just making things up day after day to people who might have the disease, to people who are fearful of loved ones getting the disease, it’s been a feeling of anger and sadness more even than fear.

Hamblin: I wanted to ask about the messaging, from the government and from other officials, that the disease is mainly severe for people at high risk. Older people, people with chronic diseases. So [other people] don’t need to be concerned. As someone with a condition that at this point could be considered chronic, did any of that reach you?

Flanagan: For sure. They were talking about at-risk. And I clearly remember, I think it was maybe the very first day of that [coronavirus] task-force show, [President Donald Trump] got up there and he was like, “There’s only eight cases in America.” I so wanted to hear that, and my husband watched it too, and I said, “Rob, did you hear that? There’s only eight cases.” And he was like, “You can never listen to anything that man says. Nothing he says is true.” And I realized that even up to this late date of the Trump situation, I still must have had some vestigial beliefs about the presidency.

Wells: It seems like, both with cancer and with this pandemic, obviously fear is a part of it. But it does seem like part of what you’re identifying and part of what I’ve been wondering a lot about is the difference, in these situations, between grief and rage.

Flanagan: My experience is that rage is always a cover emotion, and underneath that is usually some level of sorrow. The metaphor in my mind was, it didn’t have to jump the firebreak. This is America. We had a few firebreaks, and we had some excellent information, and we could have had it not jump the firebreak. It’s like cancer: So long as you can keep it from being Stage IV and jumping the firebreak and going into other organs, if you can just stop that, you’re going to probably be in good shape. There was every reason to be very serious about it very early on. And many, many, many lives would have been spared.

Wells: What do you think you know, based on your experience?

Flanagan: I always said, from the beginning, “There will be no learning.” At no point in this experience would I say, “I wouldn’t trade my cancer for anything, because now I know this and I know that.” But I learned from cancer that when anyone uses the phrase “the new normal,” you have just been biblically fucked, is what they’re trying to tell you. The new normal just means a truck ran over you, and your old life is gone.