When most of us think about the future, we do it pretty freely — W here will I be in five years? What will my children look like? What stories will I tell my grandkids? We're confident that we'll get to see certain landmark moments in our lives. But there are those in their 30s, 20s, or even younger, whose terminal diagnoses have seriously diminished their chances for reaching all of those milestones, at least in the same way that others do. When we hear these stories, we tend to think of the unfairness of it all.
That's where My Last Days, an award-winning web series created by Jane The Virgin star Justin Baldoni, comes in. The show aims to help us see past the unfairness of a terminal diagnosis to the real people living with one. The series made its television debut last night on The CW. Each episode follows one person living with a terminal illness. The series will continue tonight and Friday night. Then, the entire series will be available to stream online.
In anticipation of the show's TV debut, we spoke with four of the women featured. Kat Lazo, Isabel Bueso, Jess Oldwyn, and Claire Wineland each live with different illnesses that touch their lives in different ways, but all of their stories reflect a shared desire to live loudly and happily in the time they have.
They hope to send a wake-up call to viewers by sharing their experiences. Wineland told us that otherwise-healthy people are "wrong in thinking that if your life is shorter than others’, that means it’s less than or less important. From where I’m standing, the length of one’s life has very little to do with its impact and with its quality."
It isn't the length of your life that counts for the most — what matters is how you live it.
Ahead, Lazo, Bueso, Oldwyn, and Wineland share their stories. After getting to know them, you can donate to their causes, here.
Interviews have been edited for length and clarity.
Kat Lazo
Lazo, a self-described foodie who grounds her identity in the food she cooks and eats, has had to make major lifestyle changes after being diagnosed with gastric cancer. Lazo, who is 25, uses cannabis oil to manage symptoms, such as pain and nausea.
Describe your illness in your own words.
"I don’t really go into detail when talking to people about exactly what I have, unless they ask. I just say I have gastric cancer, which is cancer of [the] stomach. Throughout the years, it has developed — it has gone to my ovaries, it’s been in my bones, it’s been in very different places in my body. I describe it as something that, honestly, eats you up inside. It’s this illness that eats your body physically and destroys your body physically."
When did you receive your diagnosis?
"It was about five years ago. One day, I got off work. I was making dinner and I don’t know what happened. I woke up the next day at the hospital. Apparently, my partner [at the time] came home, found me on the floor, and I had been bleeding — I don’t know how long — but I had been bleeding. I got tested for all kinds of things. I followed up with my doctor. That very next Monday, they said, ‘Ms. Lazo, you have gastric cancer, cancer of the stomach, and if you don’t get treated, there is a possibility that you could die from this.’
"I just froze...I left. I left and I didn’t think about it. I didn’t talk about it. I just let it sink in. And then I got really, really sick. I lost so much weight. I was 145 pounds and it was just shredding off me. My hair was falling [out]. I did not look good. I couldn’t sleep. I couldn’t eat. And then, I finally decided that I was going to get treated...I remember packing up a little bag for the weekend or the week, and I ended up staying in the hospital for about three months, getting treated — rounds and rounds of chemo."
Has your view of the world or outlook on life changed since being diagnosed? How?
"I have become more aware. When I was going through the treatment, when I first found out about the cancer, I was completely unaware of what it meant or how my life would change. I can say now that cancer, to me, equals ‘life’ — because I am aware that I am living. I find life in the littlest things, like waking up in the morning without feeling nauseous, without feeling pain. It’s such a wonderful feeling to feel alive, to feel like you can control some of these things.
"People wander through this world, just walking and doing everyday things without stopping and really realizing what’s in front of them or what they have and what they’re grateful for. I’m very thankful. That has really worked to my advantage in order to be able to fight this sickness. For me, your attitude is half the fight. Your attitude and your outlook and your desire to live is half the fight. I think I’m doing pretty good. If it all came down to how I feel and what I think and how healthy my mind and my heart is, I think I have already won. I have."
What's stayed the same? In what ways does your diagnosis not limit you?
"Cancer has attacked my body to the core — bones, skin, muscle, everything. But...it hasn’t changed who I am. It’s just polished off those rough edges of my personality...I haven’t really gained all the patience that I should have, but I have learned how to walk away. I have learned to say everything I want to say, whether people like it or not. I have learned to say I love you and I miss you more."
What are you hoping viewers learn from watching the show?
"Don’t wait until the last minute to say the things that you want to say or do the things you want to do. Don’t have a bucket list just because you’re dying. Have a bucket list just because that’s what you want to do at that very moment. Tell people that you love them and cherish the people that are in your life. Welcome love."
Isabel Bueso
Bueso, who is 21, was born with MPS VI, a rare genetic diseases in which the body isn't able to produce a specific enzyme. This can affect bone and organ development, with symptoms varying from skeletal issues and pain to vision or hearing loss and heart problems. It's estimated that this disease occurs in one in every 250,000 to 600,000 infants, though like Bueso, many aren't diagnosed until symptoms appear during early childhood.
Bueso was diagnosed at one-and-a-half. Enzyme replacement therapy and physical therapy can help to manage the discomfort and pain that comes with MPS VI, but many with the disease lead much shorter lives due to the many complications. Clinical trials are ongoing, so researchers may better understand this rare illness.
What has it been like to grow up with something that makes you different?
"At first, I was not really aware, because I was little. I didn’t really understand it. But as I got older, I got to learn more about it and I decided to embrace life. Nowadays, I need to have someone with me all the time to help me. I get frustrated when I need to ask for help, but at the same time, I feel thankful for having support from my family or friends."
How do you think this has changed your view of the world or outlook on life?
"Having MPS VI hasn’t changed my attitude towards life. Despite my challenges, I go through my life with a positive attitude. I feel like that’s really important to me. I have been hospitalized many times — surgeries, lots of appointments, and weekly infusions are normal for me. I just have to balance them with adding to my life moments that will take my breath away. Surrounding myself with positive people, going to beautiful places (because I like to travel a lot), and trying new things all make my life more meaningful. I discover that the right attitude is what will help to move ahead in life. My parents taught me to view possibilities in my disability."
What are you hoping viewers learn from watching the show?
"I hope that people learn that it’s possible to live with a positive attitude regardless of a medical condition. Life can be a happy adventure if you find the right glasses to look through. You can see life in black and white or you can choose to see life in color.
I also want people to know about MPS VI. Educating ourselves about a specific, rare condition will give people the tools to help them support others."
What are your main hopes and goals for your "last days"?
"I hope to be an inspiration to others. I am passionate about dancing and want to continue doing that. I’m a junior in college who aspires to become a sociologist, to help people with disabilities to pursue their dreams. My dream job is to work at the Make-A-Wish Foundation."
Jess Oldwyn
Oldwyn, who is 35, was diagnosed with an infiltrating astrocytoma, which she describes as a "brain tumor that grows fingers within your brain." In other words, this type of tumor can continue to grow and attack otherwise-healthy tissue, even after surgical attempts to remove it. Oldwyn has undergone three brain surgeries at this point. She lives with her husband, Dan (pictured here).
When did you receive your diagnosis?
"I was 29. I had a massive headache where I lost vision. We started googling it and determined it was a thunderclap headache, which, 25% of the time can mean a brain tumor or an aneurysm, but 75% of the time, it’s nothing. The only way to determine if it’s anything dangerous is to get a brain scan. I went to the doctor’s and I asked for a brain scan and the doctors told me I did not have a thunderclap headache and that patients should not google symptoms.
"I respectfully said, you can either get me a brain scan or I’ll go to the next doctor, and the next doctor, and the next doctor, until I get a brain scan to make sure that I’m okay. Thankfully, after that I got the brain scan. When I came out of that machine, the MRI tech’s eyes were huge. She looked at me and said, 'When do you get your results?'"
How does it affect your everyday life?
"During my first brain surgery, there was a complication. I had a blood clot in my tumor bed, so I had to do a second emergency brain surgery. When I came out of that, I was paralyzed on my right side and had severe aphasia where I couldn’t speak and I didn’t recognize written language. I could barely understand when people would be talking to me. I couldn’t take care of myself. I had to do 11 months of speech and physical therapy. At that time, the doctors and nurses told me that I wouldn’t get any better, that I wouldn’t walk again, that I wouldn’t read again and that I would be, in their words, ‘simple.’ I’d just work for hours a day, trying to read aloud to my husband and to my parents. I would try and walk. I would try and brush my teeth. I would try and use a fork. It was crazy. That part of my life was incredibly hard.
"Since then, I’ve had [two recurrences]. I’m working on a fourth brain surgery. People see me and they don’t know that there’s anything wrong with me, but I’m doing all these treatments and I’m trying not to let cancer completely dictate my life. Now, I can walk and run and go skiing. I go for walks every morning with friends. I still live my same life, but I’ve just compounded it with all these other things I have to do on top of it."
Who is your support system?
"This is one of the weirdest things to say, but I was really lucky that my boyfriend had lost his job a month prior to my diagnosis (laughs). It was 2010 and the economy tanked; a lot of people were losing their jobs. I was really fortunate that that made it so that Dan was able to move in with me and take care of me. He would pick me up and put me in a bath to wash me. He would pick up my right arm, because I couldn’t move it on my own. He would pick it up and he would shave my armpits. I couldn’t even ask for it, but he knew I would want it. And my parents would take turns coming to me and sitting with me and they would bring a whiteboard and they would help me try and write the alphabet again."
Has your view of the world or outlook on life changed since being diagnosed? How?
"First of all, I have a very low threshold for bullshit. It’s caused me to fight for my rights and fight for my health. It’s really pushed me even more to be an independent thinker. Fighting for that brain scan was just the very beginning of a long battle where I’ve had to really think outside the box. The first doctors told me, after the brain surgery, number one, that I’d be simple, that I wouldn’t walk again. I take everything with a grain of salt now. I don’t let anyone determine when I’m going to die, or what I can and cannot do."
What are you hoping viewers learn from watching the show?
"It’s incredibly important to advocate for yourself when you get diagnosed. I was told that there was no hope for me. If I would have listened to that, there’s a chance I would have stopped trying. Thankfully, I’m incredibly stubborn and I’m a communicator. I just hope that it inspires some people to choose to try, whatever that means to someone else. I hope that’s what comes across from our episode — that, and what a badass I’ve been [laughs]."
What are your main hopes and goals for your "last days"?
"I’ve got hopes and goals as a normal person — because when I look in the mirror, I don’t see a person a that’s sick, I don’t see a person that’s dying. So my goals are to live a happy, fulfilled life, and it’s pretty simple — have fun every day, laugh every day. Sometimes, it’s as simple as getting up and showering and that’s a successful day when I’m really sick or I’m having seizures. And on the cancer side of things, my hopes and goals are to help empower patients to realize that we deserve to be treated with respect. We’re just as human as we were before. I hope that this show can spark something in another person to realize that they can demand more. In a non-combative way, it’s okay to stand up for yourself."
Claire Wineland
Wineland, who is 19, was diagnosed with cystic fibrosis (sometimes shortened to CF) when she was born. Since then, she's founded a nonprofit, Claire's Place Foundation, Inc., which provides support for children who have CF and their families. She's toured the country as a TEDx speaker, raising awareness for the disease.
Describe your illness to me in your own words.
"Cystic fibrosis is genetic, meaning you’re born with it. It causes your mucus to be incredibly thick, like tar. It builds up in different organs and causes different problems. In the lungs, it creates a lot of infections. In the sinuses, you have chronic sinus issues. It shut down my pancreas. It makes my digestive system slow. It can hurt your reproductive organs. Yadda yadda yadda. It’s all caused by an imbalance of sodium. Your body can’t process sodium properly, so it just continues to make it and get thicker and thicker and thicker. CF is progressive, so as you get older it gets worse. It’s also terminal. There’s no current cure or any cure that’s a ‘for sure.’ So for people who have it, it ends up killing them before they get better."
How does it affect your everyday life?
"It’s a very strange illness. It’s not like other illnesses where there’s either one medication that fixes it or doesn’t. It’s so incredibly time-intensive and energy-intensive. I do four hours of breathing treatments a day, I’m on 50-some medications right now that are always fluctuating. I do shots. I do inhaled stuff. I’m in and out of the hospital. I’ve spent around a quarter of my life in the hospital. It’s kind of like having a part-time job. You have to have a bigger bandwidth to be able to deal with taking care of yourself, plus all of the other interesting facets of being a human being and trying to make it in the world. It’s not necessarily that it makes life worse, but it definitely is a lot more to think about."
How does your diagnosis impact your view on life?
"CF has greatly, greatly impacted my view of life and how we deal with suffering and how we deal with pain. The truth is, none of us like to deal with pain very much. We don’t like to deal with our own and we definitely don’t like to deal with other people’s pain. So what we do is we come up with this belief that, when someone’s suffering or when someone’s going through something challenging, it automatically means that their life is going to be less enjoyable than everyone else’s. Especially when we see people who are sick, the only conversation that goes on around that is, ‘Oh, when are they going to be healthy? Maybe one day, when they’re healthy, they can live their lives and they can have a normal, good life,’ instead of making the conversation [more like], ‘They might be sick their entire lives.’
"You can actually live a complex and beautiful life while going through pain and suffering. I don’t think I would have realized that as quickly as I did as a child if I hadn’t been going through CF and if I hadn’t been going through these experiences that everyone in my life told me were horrible and awful and they were so sorry for me. I was living a life I was incredibly proud of. I was getting to travel and speak and work on a nonprofit and be able to help people. I was in heaven as a kid growing up — and I still am. That’s not in spite of having CF at all. It’s not like, ‘Oh she has this horrible illness but makes the best of it.’ No, it’s my life. It’s complex and there [are] shitty parts and there [are] beautiful parts. I’m so grateful that I got to come to that conclusion through CF."
What's stayed the same? In what ways does your diagnosis not limit you?
"It’s up to me at the end of the day. Sure, logistically, it limits me from, like, hiking mountains (laughs). I can’t go climb Mount Everest — that’s fine. But at the end of the day, we decide how things limit us. People do this in their regular lives whether or not they have an illness. They let their situations limit them. It’s almost like we learn to pity ourselves, like, ‘Oh, we’re going through this or that so we don’t have to try harder, we don’t have to do more, we don’t have to be more because we’re going through this hard time in our lives.’
"They take it as an excuse to not. I think the whole ‘how does your illness limit you or how doesn’t your illness limit you’ is a weird way of talking about it for people who are sick, because there is the logistical side of it. There is the health side that you always think about, but at the end of the day, if you push harder, if you work harder, if you do more, if you try and be more, you can do things that other people couldn’t have even dreamed of."
What are you hoping viewers learn from watching the show?
"Sick people’s lives are complex and they’re intricate. It’s so much more than ‘are you sick or are you healthy?’ There’s so much more to ask and look at and examine in a person’s life that has nothing to do with them dying or not...there’s always a part of me that wants people to feel, when I tell my story, is that they’ve kind of been wrong. They’ve been wrong about what determines a good life. They’ve been wrong in thinking that if your life is shorter than others’ that means it’s less than or less important. From where I’m standing, the length of one’s life has very little to do with its impact and with its quality."
What are your main hopes and goals for your "last days"?
"My goal has always been to go to school and become an anthropologist, but that’s going to take a lot of time and energy and help and you never really know with CF where you’re going to be month-to-month. I know what the end goal is. I know I want to do that. I know I want to make enough money to start my own hospital. I want to do all this crazy stuff, but at the end of the day, my biggest hopes and dreams are to just be able to — I mean, it sounds corny — but just be able to live life slowly. Everyone talks about their bucket lists and what they want to do before they die and how they want to cram it all in, but the truth is I just want to have the luxury of living my life slowly and to be able to enjoy waking up in the morning, making a cup of tea, reading, and just slowly living like everyone else does."
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