My Moment: I Didn't Fit the Profile
My Moment is an occasional series in which Tufts graduates from across the university share stories of personal transformation—from small moments that offered new insight or inspired fresh thinking to life-changing events that altered the course of a relationship or career. Do you have a story that you’d like to share? Let us know at firstname.lastname@example.org.
Editor’s Note: Angie Brice Hessbruegge, A03, died on May 27, 2021, just as this piece was being prepared for publication. It was Angie’s wish that we share her story in hopes of educating others about the importance of early detection and empowering patients to be active decision makers in their treatment process. Read more about her journey and her partnership with LUNGevity Foundation, the nation's leading nonprofit focused on lung cancer.
In this conversation, we hear from Angie and Jan Hessbruegge, who met while studying at Tufts University in the early 2000s. At the time of the recording, they were living in Geneva, where Jan works at the United Nations Human Rights Office.
In 2018, Angie developed a persistent and progressively debilitating cough. After several misdiagnoses, she and Jan received the worst news imaginable: Angie had stage 4 lung cancer, and it was incurable.
After her diagnosis, they were determined to embrace the now, to live each day with purposeful intent while continuing to provide a loving and stable home for their two young children.
They spoke with Tufts Now about the difficulty of diagnosing Angie’s illness, how their lives changed, and the challenges of balancing cancer and parenthood.
Angie Brice Hessbruegge: My name is Angie Hessbruegge. I'm 39 years old, and I am a graduate of Tufts University, 2003.
Jan Hessbruegge: My name is Jan Hessbruegge. I'm 44 years old, and I'm a graduate of The Fletcher School at Tufts University, 2004.
AH: It was our 18th—was it 18?—anniversary.
JH: Yeah. Five days ago. It was 18 years and five days ago. We met at a party at Tufts, and Angie asked me for my telephone number.
AH: He keeps saying that! I didn't ask him for his phone number. I asked him for a card. I was an undergrad and I was about to graduate, and he was at The Fletcher School. Me and my friends, we would go to Boston. It was an event with Tufts, MIT, Harvard Business School, the graduate students. It was called Intimate Relations. Me and my friends were on our way out, and Jan and his friends were on their way in, and we started talking. He sounded like a nice guy and everything. I didn't have time and stuff. I was like, “Do you have a card? Let me just get your card, and we'll be on our merry way.” That's how the story happened. But he likes to say that I asked for his number and then the next day I called and then, you know, I basically was the driver of the relationship.
AH: I started experiencing symptoms like coughing all the time, just constantly coughing. But you know, when you have kids who are 3 and 5 years old with bacteria and stuff from school, you don't think anything of it. I started exercising more regularly, losing a lot of weight but just thinking, you know, it's part of my exercise plan that's working.
I just always had an excuse like, okay, busy mom life. It would get worse and worse. They would give me antibiotics. They would give me inhalers. Nothing's working. I started coughing up blood. I had like a fractured rib. I wasn't sleeping, they did an x-ray. And then they saw all these things on my chest. They thought I had tuberculosis, and I was hospitalized. And they said, “It looks like you have lung cancer, but we know in your case it's not because you don't fit the profile.” So we're just going to go down this list, proceed to go down to what it is that you possibly could have.
Even with those rare diseases, they were saying these aren't diseases that you can cure. So already it was scary, but cancer was still not in the cards. It was getting worse until finally I had what's called a pleural effusion. Basically, I had liters of water in my lungs, and they drained it. Then they saw that it was stage 4 non-small cell lung cancer. And that's where the journey started.
JH: Of course, already some of the initial attempts at diagnosis—whether it was tuberculosis or severe autoimmune disease—I think were quite harsh to deal with, but what was particularly hard is that they ruled out cancer based on a number of tests they'd done only then to turn around and say it is cancer after all.
After that, we learned that it's actually not so uncommon when you have younger non-smokers that it's misdiagnosed simply because it is rare still, even though it's a growing group, and the symptoms look similar to other diseases. But still, it took three months. And then, of course, you have first the shock of lung cancer, but then you also learn that even advanced lung cancers are different types, different subtypes, depending on the genetic markers—the mutation in the cells that make the cell cancerous—and the treatment options differ vastly. Especially for younger non-smokers, you tend to have more options with what is so-called “targeted therapy.”
AH: So basically, worst news of your life: You have incurable stage 4 lung cancer. Now let's just hope that you've won the cancer lottery and have this gene that we can give you a pill. It's basically a magic pill you take—you don't have to do chemo, you don't lose your hair, you don't have any of those symptoms that are associated with sick cancer patients. You can take this pill, and it will make you instantaneously better. But you just have to have this gene, and it'll take a couple of days for us to figure out whether you have it or not. So we're waiting, hoping that I have one of these genes. Turns out, luckily I do have it. So I was taking this pill, but the problem is that cancer is smart, and it’s going to find ways to multiply or shift or whatever.
You're waiting for the other shoe to drop. You know that eventually this therapy is not going to work, but there are other therapies, hopefully, that will prolong your life. And so, you know, that’s where this urgency is—”Oh my gosh, we have to do the research. We have to find it.” My oncologist had told me if this was five years ago, it would have been an automatic death sentence. I wouldn't have made it past the first year at all. And the fact that I've been on it for two years is remarkable. But when you have kids who are toddlers, that's nothing, you know? Their whole cognitive development is from zero to 6, 7 years old. You want to be there.
I'm thinking, “Okay, worst case scenario, it stops working and then I just take another pill.” But in my case, the cancer transformed or mutated into a different type, another subtype of lung cancer, for which they don't have targeted therapy. It's a non-differentiated large cell cancer, which is more aggressive, and so I had to do chemo.
I’ve done 16, 18 rounds of chemo. And when you do chemo, it progressively stops working, which happened in my case too. Now I'm in unchartered territory doing the immunotherapy with a new targeted therapy that they don't have enough data on. I just feel like I'm in the wild, wild west.
It was shocking in the sense that I knew something was wrong because my pulmonologist came into the room and sat down—normally he doesn't sit down—and I remember Jan thought he heard him say that it wasn't cancer. What was it?
JH: Well, I heard him say, “We have good news.” And then he added, “These cells are tumor cells.” And I was like, “Wait, how is that good news?” Of course, it was not good news. He was just saying it was news, and maybe I wanted to hear it was good news.
AH: Yeah, yeah. And then my initial reaction...I just remember just being like, “No, this isn't how my story ends. This is not real. This is not true.” Yes, we all die. But this isn't what's going to kill me.
And I just had this strong urgency like, “No, no, no, no, no. We're gonna fight this. We're gonna beat this.” All the lingo you normally hear with cancer. “You got this,” you know, all of that stuff. I just remember a song in my head, like an old gospel song that I kept humming to myself and just kind of bringing me at peace almost.
This is like, what happens when you get the worst news of your life. And then, how do you move on from there? How do you keep going? You keep going. You have no choice.
I think for me, it's the loss of innocence. I don't have the luxury anymore to look at time the same way. Yes, we're all terminal. We're going to die. But unless you have this looming thing at the top of your head all the time, constantly reminding you what's at stake, how do I stay sane? Because this can make you go crazy if you're just constantly thinking, “What could I have done? What did I do wrong?” Playing the blame game, the guilt game, the anxiety, like, “What if this doesn't work?” You know the only way you can stay sane is to stay in the present, but it's so hard to stay in the present because we're just human. You basically have to kind of psych yourself into doing it because this is the only way you can survive.
What makes it sad is thinking about the things you're going to miss out on, things with the kids, special events and milestones and everything. I think, for me, it's like that loss of innocence, of not being able to just complain about silly things or just be like, oh, this is what my kid did today, or this is so annoying. In a way, it's good because you shouldn't really be wasting your time complaining about these things anyway. Life is more than that, but it's just a very drastic way of doing it.
JH: Cancer in a way becomes the sort of the dominant theme in your life simply because it's not only the sickness that Angie's dealing with and the worry for her life, but it affects your children and other aspects of your life as you're trying to make everything still work. It kind of spreads in a negative way in a lot of areas.
One of the revelations I had way towards the beginning is that when you have small children—our children are now 6 and 8 years old—even more so than for anyone, life doesn't wait on you, whether you have cancer or not. If you allow this to paralyze you and you're not living the now and what there is, you're missing out on moments that don't come back. But even if she was miraculously cured, it's not that we could go back to the day of the diagnosis and say everything we missed out in these years because we were busy with cancer, we’re just going to pick up. Children need you more today than tomorrow or in a year or five years' time.
So that was really one of the revelations, even for myself, to take time much more seriously and do things now much more consciously and not just assume X amount of lifetime—I can always do that later—because it's not like that. There are moments that come once and that don't stay, and that is regardless of whether you live with cancer or not.
AH: Yeah. There is, there is no normal to go back to. You know, people keep assuming once the pandemic's over...no. There's been a shift; we're not going to go back. You can't go back. We can't go back and be like, “Okay, everybody's vaccinated. Coast is clear, guys. Let's resume business as usual.” We've moved on.
We see it with our kids now. Our daughter, she's reading to herself now, bedtime stories. And my son the other day was just like, “When you had lung cancer, I was three and a half, and now I'm five years old. That's two years.” They're also more cognizant of time. That’s the other thing too. I think for a while, I was a little sad for them. They're too young to be dealing with this and to be having such heartache or hardship. They're very involved. They're part of the process.
We've been advised by my doctor and my therapist to not sugarcoat it for them and be like, “Okay guys, everything's going to be fine. Mommy's going to be fine. This is all going to work out,” because we simply don't know. And that's how life is. You don't know, but for them to be experiencing it at this young of an age...in a way will make them very resilient and give them lots of skills that they'll be able to translate later on in life. It's just sometimes I wonder, “Does it have to be this drastic? Could they have learned it a different way?”
With a lot of people's cancer journeys, they say like, “The positive thing about having cancer...” How can you say positive and cancer in the same sentence? But you learn that there are some silver linings. It forces you to look at life in just a completely different way.
JH: I think one thing that’s difficult with lung cancer at that advanced stage is that you cannot cure it, except in a few almost miraculous cases. I think it’s easy then for people to immediately despair and say, “Well, the best I can hope for is to extend my life by some time because the doctors, the oncologists will say, ‘Oh, this is a big breakthrough. This medicine, the overall survival rate is X number of years and months’—they always add months because we're talking about still small numbers of years—and when you hear it, it sounds like...
AH: It sounds like nothing.
JH: It sounds like nothing. And in a way, in a lifespan, it is very little, but then having gone through two years, it has been a lot, right? I think even with everything we have been through, I am thankful for the two years we have had so far. Those were meaningful years and meaningful times we spent together, meaningful time for our children.
AH: I want people to know that lung cancer can happen to anyone. All you need are lungs. That's it. That's the only risk factor. Not to scare you, like, you have to go get checked right now because a little cough might be lung cancer, but just to have more compassion. You don't know what people are going through. You don't know what's happening inside of their personal lives. Just be more mindful of time. We're all here for a limited time. How we can use our best time on earth to serve our family and the ones that we love, how we can be there for the ones that support us and the ones that we want to live for.
JH: I think you're doing yourself a disservice by only thinking, “It's only worth it if I can be cured and I can expect to live till 80.” Frankly, none of us has that guarantee. We are all dealing with different percentages of risk to our lives, but it is just much more in your face when you have cancer. Still, you can be thankful for the time you actually have, and that time also becomes more intense because you know how much of a gift it is.
AH: Yeah, totally agree.
Ronee Saroff can be reached at email@example.com.