“I don’t know how much time I get.”
Justine Luebke, a 32-year-old teacher who lives in Montana, was undergoing chemotherapy for metastatic cancer when the pandemic hit last year. As the world shut down, Luebke was figuring out what she wanted the rest of her life to look like. “Time takes on a new meaning when you go through this,” she said. “This pandemic has definitely felt like it’s taken time from me. And I don’t know how much time I get.”
There is no cure for metastatic cancer. Treatment options are available, but once diagnosed, it is generally understood that patients will be sick for the rest of their lives. The median survival range for people with the disease is three years, but that can vary wildly depending on factors like age and treatment. It is common among those who are diagnosed to experience an urgent shift in their priorities — some want to travel the world, or stay close to family, or pursue meaningful fulfillment in their professional enterprises. Unfortunately, all of those considerations are sidelined by a pandemic.
As vaccinations ramp up, the country is taking on a newfound optimism and a sense that the end of the worst of this pandemic is fast approaching. For many, the past year will represent only a blip in their lifespan. But the same blessing does not apply to those battling cancer. They aren’t guaranteed anything, other than the weekslong intervals between check-ins with their doctors. They never know what news the next scan might bring. This pandemic has been cruelly unfair for so many different reasons, but especially for those who don’t know how much time they have left — and will never get lost time back.
We reached out to three women, all in their 30s, about what it’s been like to endure the Covid-19 pandemic while having metastatic cancer. Some of them are raising kids, some are still going to work, and all of them feel like the pandemic has stolen a precious year away from them. When you’re sick, all you want to do is hug your friends. Read their stories below.
“One thing I wasn’t willing to give up is teaching ... My kids are my biggest reason for fighting.”
Justine Luebke, 32, Montana
In 2019 I was diagnosed with rectal cancer. I went through five weeks of chemo, and then waited for my surgery. It went terribly wrong. I ended up losing all of my large intestines, most of my small, and was in the ICU for a month. By the time I was strong enough to do the cleanup chemo, they had found that the cancer had spread to my liver and my lungs. So, in August of that year, I had confirmed metastatic cancer. I was doing chemo all the way up to April 2020.
Covid felt like a domino effect. It was a Saturday night in March, and my family called me and said that I needed to consider going fully into quarantine. I’m a teacher, so that would’ve meant not teaching. I went to the grocery store and stocked up, and told my school that I shouldn’t be going in. But after that weekend, everything shut down anyway. When I was going through these treatments, I’d have my parents at every appointment with me. Every doctor’s appointment, every scan, they were present. And now they couldn’t be there. That was extremely tough, especially on chemo days.
I still get to see my parents outside of the appointments. Fighting cancer is as mental as it is physical, and if I didn’t see my parents I’d go to a pretty dark place. My mom works from home. My dad goes into work but is very careful. I’m now fully vaccinated, so that helps a ton, too. I’m able to see friends who are also vaccinated.
One thing I wasn’t willing to give up is teaching. I’ve been teaching in person all year, and I try to create a bubble in my classroom. My kids are my biggest reason for fighting. I don’t have kids of my own, and I will not be able to have kids of my own. So, my students are like my kids. The fifth graders I teach are the same students I had in kindergarten. When they run up to me and give me a hug, that’s when I’m like, “Okay, that’s why you have to keep fighting, because you’re not going to leave these kids.” When I come to school, I leave what I’m dealing with at the door and I can be there for them. They give me meaning beyond cancer.
Time takes on a new meaning when you go through this. They almost lost me when I was in the ER. After that, the moments you spend with your friends and your family are so precious. We’ve all tried to find connections during quarantine. We can Zoom with our friends. But you just want to be having dinner in their house together. This pandemic has definitely felt like it’s taken time from me. And I don’t know how much time I get.
“When you’re dealing with full-time treatment, it makes you want to go out into the world and travel and experience all of these things.”
Emily Veach, 39, Illinois
Covid has been stressful and scary, but I also felt like I had a bit of a head start on these feelings of uncertainty, and the perception of threat in my environment. A lot more people have gotten to know the things that I worry about already. My idea of normalcy was stripped away a long time ago.
I was originally diagnosed in 2014 with early-stage breast cancer. It has since spread to my bones, and became late-stage breast cancer in 2017. My treatment weakens my immune system. I’ve had fevers that have landed me in the hospital, so I’ve always been aware of that even before the pandemic — long before 2020, I was flying with a mask on. Now, I no longer have to put up with any weird stares about wearing a mask.
I was making plans to move to Illinois before the pandemic started. When the lockdowns occurred, I knew that’s what I still wanted to do, and I went through all the scenarios to figure out what was the safest way. My wonderful mother volunteered to drive out and get me. I rented an SUV and packed everything in there, to the point that it felt like a big camping trip. I made the journey alone, and made stops along the way. My favorite was in Cedar Crest, New Mexico. I knew someone through my network who runs a nonprofit that does adventure trips for cancer survivors. I wanted to spend this trip outside of anyone’s home, and he invited me to camp in his place. It was up in the mountains, he hooked me up with a portable heater, and I spent the night in his horse barn. It was beautiful.
The things that have become most important in my life are nature and my community. But I haven’t seen my dad in a long time. I haven’t seen my best friends. We can jump on video calls, but I really want to hug my friends. When you’re dealing with full-time treatment, it makes you want to go out into the world and travel and experience all of these things. There’s a time sensitivity about that to me.
I have scans every 12 weeks. You never know which scan is going to be a really big change in your life. While I have this stability, I want to be out doing all I can.
“I want [my kids] to look back and say, ‘Mama really tried to do these things before she was gone.’”
Erin Schellert, 37, Missouri
I was diagnosed with metastatic breast cancer in May of 2019. I was 36 years old, and my two kids turned 2 and 4 within a month of my diagnosis. I went in to see a doctor for an unrelated issue, and through some imaging they found a mass on my breast. It went downhill from there. Breast cancer wasn’t even on my radar, and then I learned it was in my brain, my lungs, and my bones. You’re in treatment indefinitely with my cancer. I live my life in three-month increments.
Currently I’m doing really well. If I was walking down the street you’d have no idea what was going on with me. That whole summer, two years ago, felt like it was stolen from us. I was thinking about all the fun things we could do as a family, and now here I was sick from chemo and hairless. 2020 was supposed to be the year we made up for lost time.
I heard bits and pieces about Covid in the news in the first few months of last year. I can’t remember the exact date, but there was definitely a moment where it felt like the bottom fell out. I saw the writing on the wall that things were about to close down.
We obviously couldn’t travel last summer, but we were able to get together with some people who had kids between the ages of 1 through 5. My husband was doing all the shopping, which was a big adjustment for us. It was manageable, but as the year progressed, we definitely got more scared. My mother used to visit quite a bit to give me a break and let me rest for a little bit. With nobody comfortable with flying, she didn’t come as often. Before the pandemic, we wanted to hire someone to come to the house and take care of the kids — but we could never find a situation we were comfortable with. That was hard, because I do get tired. Little kids are exhausting.
You never know, but it’s pretty likely that my lifespan will be shortened and that my kids won’t have their whole life with their mama. There’s so many things I want to do with them and want to experience together. This should’ve been my daughter’s first year of kindergarten. There’s years of school I’m probably not going to be here for, and we didn’t end up sending her because we were nervous about exposure. We’ve done a good job of making memories this last year, but one thing I really want to do is see all 50 states with my kids. I got them little state passports, and we’re gonna fill them all out. We need to get started on that. The clock is ticking. I want them to look back and say, “Mama really tried to do these things before she was gone.”
The first thing we’re going to do when we get a green light is a road trip. My husband and I used to love road trips before we had children. I want to put the kids in the car and have a destination in mind, but no route. We’re not big planners. We just want to see where things take us.
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