“If I could make the experience less scary for someone, I was willing to be the cancer girl.”
I told him I’ll do anything, we have to beat this. It's not like I had a type of cancer that has a really high recovery rate. I was willing to take on the risk because I felt like I had to throw everything I could into it.
“I was 35 when I was diagnosed. I had very few young people in my life who had had cancer. So my goal has always been to make it a little less scary for people. My mentor noticed that I was starting to be really public with my experience and asked me, “How do you feel about being the cancer girl?” Is that what you want to be known for?” Well not really, but if you’re fortunate enough to survive, what you say has more weight to it. I knew I wanted to use that currency for good. And if I could make the experience less scary for someone, I was willing to be the cancer girl.
After surgeries that removed 6 inches from my colon, half of my liver, and my gallbladder - and three rounds of chemo - my doctor recommended an immunotherapy research trial. I was responding well to chemo in the sense that it wasn’t returning aggressively, but it was still returning. He said it’s a persistent cancer. I was a little scared, but I knew immunotherapy was the future of cancer therapy so I wanted to get in on it. I was accepted into the trial, but I had to pay for my own travel. I definitely recommend people seek out trials, but also with the understanding that you may have to pay for it yourself. I was lucky enough to have a generous support system.
I had a lot of confidence in the medical community for the clinical trial. It was a professional and welcoming environment. I also really trusted my oncologist. I knew he believed in me and could see that I was a mom of a young child. I told him I’ll do anything, we have to beat this. It's not like I had a type of cancer that has a really high recovery rate. I was willing to take on the risk because I felt like I had to throw everything I could into it.
I was incredibly blessed to have a team that would have done anything to make it possible for me to continue working. I was working remotely in 2013/14, back before it was normal. I remember we had this iPad, I had one in the hospital with me and they had one they would put at the seat where I usually worked. I would still hold our weekly Friday staff meetings while I was getting treatment. We figured out a way to make it work. I couldn’t have done it without them.
After the trial, there was very little follow-up for data collection. Perhaps they didn’t have the funding they would have liked to. But I got what I wanted out of it. I got the treatment. My cancer did come back in my lung, which I had surgery for. That was 6 years ago. I’m not sure how much to attribute this good outcome to the immunotherapy, but it certainly played a part.
I try to live my daily life like I almost didn’t get to. That is what it’s about for me. Not to just stay alive, but to be a great mom, a great employee, and to create change in the community. I feel like my career was on this path already, but I’m even more galvanized now to make my life count.”
I told him I’ll do anything, we have to beat this. It's not like I had a type of cancer that has a really high recovery rate. I was willing to take on the risk because I felt like I had to throw everything I could into it.
“I was 35 when I was diagnosed. I had very few young people in my life who had had cancer. So my goal has always been to make it a little less scary for people. My mentor noticed that I was starting to be really public with my experience and asked me, “How do you feel about being the cancer girl?” Is that what you want to be known for?” Well not really, but if you’re fortunate enough to survive, what you say has more weight to it. I knew I wanted to use that currency for good. And if I could make the experience less scary for someone, I was willing to be the cancer girl.
After surgeries that removed 6 inches from my colon, half of my liver, and my gallbladder - and three rounds of chemo - my doctor recommended an immunotherapy research trial. I was responding well to chemo in the sense that it wasn’t returning aggressively, but it was still returning. He said it’s a persistent cancer. I was a little scared, but I knew immunotherapy was the future of cancer therapy so I wanted to get in on it. I was accepted into the trial, but I had to pay for my own travel. I definitely recommend people seek out trials, but also with the understanding that you may have to pay for it yourself. I was lucky enough to have a generous support system.
I had a lot of confidence in the medical community for the clinical trial. It was a professional and welcoming environment. I also really trusted my oncologist. I knew he believed in me and could see that I was a mom of a young child. I told him I’ll do anything, we have to beat this. It's not like I had a type of cancer that has a really high recovery rate. I was willing to take on the risk because I felt like I had to throw everything I could into it.
I was incredibly blessed to have a team that would have done anything to make it possible for me to continue working. I was working remotely in 2013/14, back before it was normal. I remember we had this iPad, I had one in the hospital with me and they had one they would put at the seat where I usually worked. I would still hold our weekly Friday staff meetings while I was getting treatment. We figured out a way to make it work. I couldn’t have done it without them.
After the trial, there was very little follow-up for data collection. Perhaps they didn’t have the funding they would have liked to. But I got what I wanted out of it. I got the treatment. My cancer did come back in my lung, which I had surgery for. That was 6 years ago. I’m not sure how much to attribute this good outcome to the immunotherapy, but it certainly played a part.
I try to live my daily life like I almost didn’t get to. That is what it’s about for me. Not to just stay alive, but to be a great mom, a great employee, and to create change in the community. I feel like my career was on this path already, but I’m even more galvanized now to make my life count.”
I told him I’ll do anything, we have to beat this. It's not like I had a type of cancer that has a really high recovery rate. I was willing to take on the risk because I felt like I had to throw everything I could into it.
“I was 35 when I was diagnosed. I had very few young people in my life who had had cancer. So my goal has always been to make it a little less scary for people. My mentor noticed that I was starting to be really public with my experience and asked me, “How do you feel about being the cancer girl?” Is that what you want to be known for?” Well not really, but if you’re fortunate enough to survive, what you say has more weight to it. I knew I wanted to use that currency for good. And if I could make the experience less scary for someone, I was willing to be the cancer girl.
After surgeries that removed 6 inches from my colon, half of my liver, and my gallbladder - and three rounds of chemo - my doctor recommended an immunotherapy research trial. I was responding well to chemo in the sense that it wasn’t returning aggressively, but it was still returning. He said it’s a persistent cancer. I was a little scared, but I knew immunotherapy was the future of cancer therapy so I wanted to get in on it. I was accepted into the trial, but I had to pay for my own travel. I definitely recommend people seek out trials, but also with the understanding that you may have to pay for it yourself. I was lucky enough to have a generous support system.
I had a lot of confidence in the medical community for the clinical trial. It was a professional and welcoming environment. I also really trusted my oncologist. I knew he believed in me and could see that I was a mom of a young child. I told him I’ll do anything, we have to beat this. It's not like I had a type of cancer that has a really high recovery rate. I was willing to take on the risk because I felt like I had to throw everything I could into it.
I was incredibly blessed to have a team that would have done anything to make it possible for me to continue working. I was working remotely in 2013/14, back before it was normal. I remember we had this iPad, I had one in the hospital with me and they had one they would put at the seat where I usually worked. I would still hold our weekly Friday staff meetings while I was getting treatment. We figured out a way to make it work. I couldn’t have done it without them.
After the trial, there was very little follow-up for data collection. Perhaps they didn’t have the funding they would have liked to. But I got what I wanted out of it. I got the treatment. My cancer did come back in my lung, which I had surgery for. That was 6 years ago. I’m not sure how much to attribute this good outcome to the immunotherapy, but it certainly played a part.
I try to live my daily life like I almost didn’t get to. That is what it’s about for me. Not to just stay alive, but to be a great mom, a great employee, and to create change in the community. I feel like my career was on this path already, but I’m even more galvanized now to make my life count.”
I told him I’ll do anything, we have to beat this. It's not like I had a type of cancer that has a really high recovery rate. I was willing to take on the risk because I felt like I had to throw everything I could into it.
“I was 35 when I was diagnosed. I had very few young people in my life who had had cancer. So my goal has always been to make it a little less scary for people. My mentor noticed that I was starting to be really public with my experience and asked me, “How do you feel about being the cancer girl?” Is that what you want to be known for?” Well not really, but if you’re fortunate enough to survive, what you say has more weight to it. I knew I wanted to use that currency for good. And if I could make the experience less scary for someone, I was willing to be the cancer girl.
After surgeries that removed 6 inches from my colon, half of my liver, and my gallbladder - and three rounds of chemo - my doctor recommended an immunotherapy research trial. I was responding well to chemo in the sense that it wasn’t returning aggressively, but it was still returning. He said it’s a persistent cancer. I was a little scared, but I knew immunotherapy was the future of cancer therapy so I wanted to get in on it. I was accepted into the trial, but I had to pay for my own travel. I definitely recommend people seek out trials, but also with the understanding that you may have to pay for it yourself. I was lucky enough to have a generous support system.
I had a lot of confidence in the medical community for the clinical trial. It was a professional and welcoming environment. I also really trusted my oncologist. I knew he believed in me and could see that I was a mom of a young child. I told him I’ll do anything, we have to beat this. It's not like I had a type of cancer that has a really high recovery rate. I was willing to take on the risk because I felt like I had to throw everything I could into it.
I was incredibly blessed to have a team that would have done anything to make it possible for me to continue working. I was working remotely in 2013/14, back before it was normal. I remember we had this iPad, I had one in the hospital with me and they had one they would put at the seat where I usually worked. I would still hold our weekly Friday staff meetings while I was getting treatment. We figured out a way to make it work. I couldn’t have done it without them.
After the trial, there was very little follow-up for data collection. Perhaps they didn’t have the funding they would have liked to. But I got what I wanted out of it. I got the treatment. My cancer did come back in my lung, which I had surgery for. That was 6 years ago. I’m not sure how much to attribute this good outcome to the immunotherapy, but it certainly played a part.
I try to live my daily life like I almost didn’t get to. That is what it’s about for me. Not to just stay alive, but to be a great mom, a great employee, and to create change in the community. I feel like my career was on this path already, but I’m even more galvanized now to make my life count.”
“Sometimes people want to help but don't know how. My advice is that if you love someone with cancer, don’t wait or ask first before helping. Because that’s a lot for the patient, in terms of making decisions or trying to guess what you actually ARE willing to do. Just do something. Go visit. Show up. It doesn’t need to be perfect. I never wished someone hadn’t shown up. You never regret showing up.”
Representation Matters
Increasing diversity in clinical trials builds trust, promotes health equity, and leads to more effective treatments and better outcomes (NEJM). But there is much work to be done - and barriers to break - to improve awareness and access for all people.
Do you know someone who is a member of a marginalized community who has participated in a clinical trial? If so, we’d love to meet them and share their story. We hope to represent the many faces of clinical trials through this project, and inspire others by shining a light on their experience.
They can contact us here.
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