“We’re told to listen to our doctors, but sometimes we need to have the doctors listen to us.”
“The clock starts ticking when you have cancer. I didn’t know how long I had. And COVID was tough. Even when things started to open up, I couldn’t go out in public because I was immunocompromised. My dad was sick at the time while I was going through treatment. It was hard to tell him I was sick, when he was sick. We had phone conversations and an occasional breakfast. He actually passed away when I was in surgery. And so I woke up to the news that my dad was dead. My husband had to tell me that.
The process of staging my cancer took several weeks. As someone who has worked on the medical system side of clinical trials, that time seems to move fast. But when you become the patient and you’re not sure what’s going on in your body, the time doesn’t move fast enough. Weekends are hard. After hours are hard. Insurance coverage delays are a barrier. I was working for a community-based health system at the time so I thought things would be expedited, but they weren’t.
I’m so glad I had the opportunity to go through a clinical trial. It helped me figure out what I should be doing differently. I made lifestyle and work changes. We moved from the suburbs to a condo downtown. I started my own business. I’m working independently. Finally after all these years, I have a clearer head. I wanted a fresh start. I am a better person because of my experience. And I hope that even just one person hears this and it gives them pause… or hope. Maybe they won’t agree with me, but that’s okay. It’s just totally changed my perspective. Now I’m in the mindset of limitless abundance, instead of feeling like life is a struggle and a test to get through.
My husband had cancer a few years before me. People were like, why are you guys the cancer couple? He was afraid and I do think that sometimes your spouse may not be the best person to do everything for you. Because when you’re having conversations and it gets hard, you need someone to make decisions for you, your way. Some people can’t do that. I had to trust my friend. I said, “Hey, if it gets hard and things go south, I need you to make sure that my voice is heard and you do what I asked you to do. And she said, yeah, I can do that.”
“The clock starts ticking when you have cancer. I didn’t know how long I had. And COVID was tough. Even when things started to open up, I couldn’t go out in public because I was immunocompromised. My dad was sick at the time while I was going through treatment. It was hard to tell him I was sick, when he was sick. We had phone conversations and an occasional breakfast. He actually passed away when I was in surgery. And so I woke up to the news that my dad was dead. My husband had to tell me that.
The process of staging my cancer took several weeks. As someone who has worked on the medical system side of clinical trials, that time seems to move fast. But when you become the patient and you’re not sure what’s going on in your body, the time doesn’t move fast enough. Weekends are hard. After hours are hard. Insurance coverage delays are a barrier. I was working for a community-based health system at the time so I thought things would be expedited, but they weren’t.
I’m so glad I had the opportunity to go through a clinical trial. It helped me figure out what I should be doing differently. I made lifestyle and work changes. We moved from the suburbs to a condo downtown. I started my own business. I’m working independently. Finally after all these years, I have a clearer head. I wanted a fresh start. I am a better person because of my experience. And I hope that even just one person hears this and it gives them pause… or hope. Maybe they won’t agree with me, but that’s okay. It’s just totally changed my perspective. Now I’m in the mindset of limitless abundance, instead of feeling like life is a struggle and a test to get through.
My husband had cancer a few years before me. People were like, why are you guys the cancer couple? He was afraid and I do think that sometimes your spouse may not be the best person to do everything for you. Because when you’re having conversations and it gets hard, you need someone to make decisions for you, your way. Some people can’t do that. I had to trust my friend. I said, “Hey, if it gets hard and things go south, I need you to make sure that my voice is heard and you do what I asked you to do. And she said, yeah, I can do that.”
“The clock starts ticking when you have cancer. I didn’t know how long I had. And COVID was tough. Even when things started to open up, I couldn’t go out in public because I was immunocompromised. My dad was sick at the time while I was going through treatment. It was hard to tell him I was sick, when he was sick. We had phone conversations and an occasional breakfast. He actually passed away when I was in surgery. And so I woke up to the news that my dad was dead. My husband had to tell me that.
The process of staging my cancer took several weeks. As someone who has worked on the medical system side of clinical trials, that time seems to move fast. But when you become the patient and you’re not sure what’s going on in your body, the time doesn’t move fast enough. Weekends are hard. After hours are hard. Insurance coverage delays are a barrier. I was working for a community-based health system at the time so I thought things would be expedited, but they weren’t.
I’m so glad I had the opportunity to go through a clinical trial. It helped me figure out what I should be doing differently. I made lifestyle and work changes. We moved from the suburbs to a condo downtown. I started my own business. I’m working independently. Finally after all these years, I have a clearer head. I wanted a fresh start. I am a better person because of my experience. And I hope that even just one person hears this and it gives them pause… or hope. Maybe they won’t agree with me, but that’s okay. It’s just totally changed my perspective. Now I’m in the mindset of limitless abundance, instead of feeling like life is a struggle and a test to get through.
My husband had cancer a few years before me. People were like, why are you guys the cancer couple? He was afraid and I do think that sometimes your spouse may not be the best person to do everything for you. Because when you’re having conversations and it gets hard, you need someone to make decisions for you, your way. Some people can’t do that. I had to trust my friend. I said, “Hey, if it gets hard and things go south, I need you to make sure that my voice is heard and you do what I asked you to do. And she said, yeah, I can do that.”
“The clock starts ticking when you have cancer. I didn’t know how long I had. And COVID was tough. Even when things started to open up, I couldn’t go out in public because I was immunocompromised. My dad was sick at the time while I was going through treatment. It was hard to tell him I was sick, when he was sick. We had phone conversations and an occasional breakfast. He actually passed away when I was in surgery. And so I woke up to the news that my dad was dead. My husband had to tell me that.
The process of staging my cancer took several weeks. As someone who has worked on the medical system side of clinical trials, that time seems to move fast. But when you become the patient and you’re not sure what’s going on in your body, the time doesn’t move fast enough. Weekends are hard. After hours are hard. Insurance coverage delays are a barrier. I was working for a community-based health system at the time so I thought things would be expedited, but they weren’t.
I’m so glad I had the opportunity to go through a clinical trial. It helped me figure out what I should be doing differently. I made lifestyle and work changes. We moved from the suburbs to a condo downtown. I started my own business. I’m working independently. Finally after all these years, I have a clearer head. I wanted a fresh start. I am a better person because of my experience. And I hope that even just one person hears this and it gives them pause… or hope. Maybe they won’t agree with me, but that’s okay. It’s just totally changed my perspective. Now I’m in the mindset of limitless abundance, instead of feeling like life is a struggle and a test to get through.
My husband had cancer a few years before me. People were like, why are you guys the cancer couple? He was afraid and I do think that sometimes your spouse may not be the best person to do everything for you. Because when you’re having conversations and it gets hard, you need someone to make decisions for you, your way. Some people can’t do that. I had to trust my friend. I said, “Hey, if it gets hard and things go south, I need you to make sure that my voice is heard and you do what I asked you to do. And she said, yeah, I can do that.”
“Sometimes all you need is somebody just to be there or to make sure you are heard. My best friend came with me to every appointment. It can be hard to pay attention during appointments, especially when you’re not feeling well. And the doctors throw a lot at you. It was really helpful to have someone there to advocate for me. Both she and my family were there to fight on my behalf, which I really appreciated, because sometimes I just didn’t have the stamina to do it.”
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.
