“It wasn’t supposed to happen. But somebody has to be the 2%”
Katie: I grew up in Omaha, went to college in Minnesota, and then followed my sisters out to Denver in 2008. I’ve been working as a headhunter since 2010. About four years into living in Denver, a tumor was discovered in my eyeball. There was a small window between that diagnosis and my stage four diagnosis where I met a guy named Nick (on LinkedIn, as one does!). I reached out to him because his company was hiring, and I wanted to see if I could help…but I mostly thought he was really cute. We ended up exchanging messages on LinkedIn and then I finally asked him out to “network.” He fell for it!
Nick: I grew up in England and had been living here in Denver for about a year before we crossed paths. I was living downtown, had a couple of good friends, and was still getting to know the city. She told me on our first date that she’d had cancer in her eyeball, but it never really fazed me.
Katie: It was on accident that I told him. Dating had been very challenging for me pre-and post-cancer. I wasn’t purposefully hiding it from him, but I learned it was better not to say anything. I once went out with a guy right before radiation. He said to me, “Your current situation isn't conducive to starting a romantic relationship. But if you would like to call me when all this stuff is over, I'd be game to hang out again.”
When I told Nick about my cancer on our first date, it was only because I was telling him that I had to sell my red scooter. He asked me why I sold it. I said, “Well, I can only see with one eye now. I had cancer in my eyeball, so it’s not safe for me to ride it.” And he replied, “Oh, so you had to get rid of the scooter?” He was very concerned about the scooter, but unfazed by the cancer!
Nick: Since she shared that the cancer was behind her, I wasn’t concerned. And we were having such a good time, so it never would have fazed me. It was also the first time we met, so it’s not like I was thinking “I’m going to marry this woman!” I was just really in the moment and enjoying hanging out with her.
Katie: I won the lottery with Nick. He was so different from everyone else I had dated. There were no games. It was just easy. After our first date, he texted me the next morning and asked when he’d get to see me again. It all just felt so effortless. It was very obvious that this was something special.
A year into dating, we thought my cancer was in the rearview. But then I got my stage four diagnosis—two days before Nick was planning to propose. My sisters said to him, “We don’t think you should propose right now. We need to figure out what we’re dealing with here.” He replied, “This doesn’t change anything. She’s still the girl I want to marry.”
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“Statistically, this wasn’t supposed to happen”
Katie: I had been told, based on a biopsy taken during radiation treatment, that there was only a 2% chance of my cancer returning, so we felt confident that I wouldn’t have to deal with it again. I had come to terms with not having vision in my left eye and having to retire from Gaelic football because of it. I went through with a biopsy even though there was nothing we could do with the results. Some people choose not to have the biopsy; they don’t want to know the outcome. And normally I don’t want to know things either. But I wanted to know this time. I believe in science, and I believe that doctors are really trying to understand this beast of a disease. And if my cells can be a piece of the puzzle to help advance that work, then I wanted to be involved. I made this decision together with my Dad, who is a doctor of internal medicine.
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It was determined that, regardless of my good biopsy results, the doctors would still monitor my lungs and liver every six months. If it were to spread, it would likely spread there. I had my first set of scans in April of 2014 – everything was clear. The crazy thing is that the doctor’s office didn’t even call to remind me to schedule my scans again six months later. You know how the gynecologist or dentist will send you a postcard in the mail reminding you to schedule an appointment? I didn’t receive that from them. I had to call them to schedule it. This reminded me how important it is to be proactive with your care.
I went in on a Tuesday morning, had the tests, and left. Later on I received a call from the oncologist herself, telling me I had 12 spots and that it could be melanoma. They wanted to biopsy my liver to be sure.
Statistically, this wasn’t supposed to happen. But someone has to be the 2%. Even though the odds of my cancer returning had been very low, it wasn’t impossible. I’m now very cautious about absorbing statistics from doctors. When I had a liver embolization in 2015, the doctor said there was a less than 1% chance of me having a hematoma. Yet I ended up having two of them.
I’ve also never Googled “uveal melanoma survival.” I believe in the power of our minds, so I don't want to hear about the worst-case scenario. I don’t want to read about likely side-effects. I don’t want any of it in my head. I always tell my doctors in clinical trials to skip over the part about side-effects. Everyone at this point knows this about me. We’re all careful about what we put out into the universe.
Nick: As a caregiver, this can be hard. Because of course I want to have some expectations of what might come up, so that I’m prepared to respond. But we’ve learned that the best thing to do is not overthink it or let it dictate your life. If side-effects occur, call your doctor and go from there.
And statistics…they are relevant to a certain extent, but not if you want to live your life. I say that because if you sit and stew on those factors, how are you ever going to actually live and enjoy the life you have? We take things day by day, and it’s really helped us. We don’t worry about the small stuff, and we focus on what our next step is, whether it’s related to the clinical trial or anything at all. This keeps us grounded and prevents things from escalating and building up in our minds. We’re very good at communicating, too. When she’s worried about something, or if I’ve got something on my mind, we have a conversation and talk through it. The more you hold it in, the more difficult it becomes. And that’s when you run into problems in a relationship or even just in your own mind.
I learned about the importance of communication when I was younger. I was diagnosed with chronic anxiety when I was 16. I used to stress the small things a lot. And it got to a point where it became very difficult and debilitating to be in social situations. I eventually learned that to handle it properly, you have to do the thing that feels the most difficult, which is to talk about it. When you can take what's in your mind and communicate it to someone else, it becomes a lot easier to manage. So now I really try to process how I feel and the way I think. When it comes to wellness, I believe you really have to think about the way you want to live your life, and you have to really want to make changes and talk about it…it’s the only way. You can’t ignore it and try not to worry about it. I’ve tried it, and it doesn’t work. There have definitely been times when I’ve felt like I wasted a lot of my life because of anxiety. But my anxiety taught me the power of communication, so I’m thankful for it.
“Our thirties were spent with me trying to not die”
Katie: We always thought we'd have a family. We didn’t talk about it at length, but it was assumed. When I got sick, we didn't dwell on it, because we were in fight or flight. It was survival time. There wasn’t time to worry about the future because we weren’t sure if it would even exist for us. We knew we needed to take things day by day. So we put kids on the back burner. We instead focused on plans that were feasible. We got married, built a house, and then I totally pulled the cancer card to get our dog, Alice!
Our thirties were spent with me trying not to die. Some years were harder than others. 2018 was the most difficult. In February, I had emergency gallbladder surgery just days before a planned hip surgery that Nick had. I also ended up getting a brain tumor and a corneal ulcer that caused temporary blindness in my seeing eye for a few days. Nick had to guide me to the bathroom. All the while, Nick’s father was dying of lung cancer. When we got back from England from the funeral, we looked at each other and knew we were hanging on by a thread. Up until that point, we had been taking things day by day. But now we were taking things minute by minute. It became an “Am I taking care of you today, or are you taking care of me?” situation. But what we maintained throughout it all was incredible communication. And…humor. We still manage to laugh our butts off! One of my lasting side effects from all of my treatments and the abdominal surgery is that it really hurts when I laugh hysterically. So when I get that keel-over, gut-wrenching laughter, I can’t breathe. And he loves it.
Nick: Well, she’ll say something that she thinks is really funny. I’ll find it annoying, but she’ll find it hilarious, and then she’ll be in pain. So I laugh because she does it to herself!
Katie: We definitely have our moments of irritation and being short with one another. But of course during the times I’m supposed to be really, really mad, I start laughing uncontrollably! Because we just don’t take things too seriously. It’s been a coping mechanism that has gotten us through some really hard times.
We also always make sure we have something to look forward to. We acknowledge the reality that plans can change, things will get canceled, and there will be disappointment. But we try to keep things on the horizon. And I think 2020 made the rest of the world realize how important that is, too. During the pandemic, everyone experienced a brief time where an illness dictated their entire life. And while most people thought everything was annoying, we were like, “Welcome to our thirties, this is how we live!” So this entire experience has just made us a lot more adaptable than we might have been otherwise.
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“There's so much privilege that isn't talked about in clinical trials”
Katie: The first doctor who diagnosed me in Denver had me written off as dead. It was not a good experience. But Memorial Sloan Kettering in New York City - where I had my first clinical trial - was amazing. It’s one of the top cancer institutions in the country, so it was a phenomenal experience. I’ve been in multiple clinical trials over the past decade, but I still keep in touch with the doctor I had there. He was so present and just fully aware that his trial would not be my last. He was really thoughtful and considerate when helping us navigate this journey over the long-term. Getting into a clinical trial is stressful and not guaranteed. You have to pass all these tests that you can’t prepare for. I was really lucky.
There's so much privilege that isn't talked about in clinical trials. It cost me well over $35,000 in travel and lodging expenses over the years, which my parents and generous friends and family helped pay for. There are people who don't even consider trials because of the financial burden of travel and missing time at work, or because they're a single parent or English isn't their first language. There are just so many barriers. It’s incredibly hard to navigate. I’ve learned a lot and try to make sure other people know about the options they have. It’s why I wrote the article in HuffPost. I also learned about the Hope Lodge halfway through my treatment in NYC. Non-profits like this can alleviate some of the financial burdens of traveling for treatment.
"It’s important to establish a team early on”
Katie: I just met with somebody last week who has uveal melanoma, and I gave her some recommendations. She had planned to reach out to one doctor, but I advised her to reach out to all of them. From my experience, it’s important to establish a team early on when you’re not in desperation mode. It can take weeks or months to get in with some doctors. It’s better to be proactive and not only have the care established but know all of your options. We reached out to doctors from coast to coast. I wanted everyone in the uveal melanoma medical community to know who I was. And I have a team of alternative medicine experts, too, like my energy healer and acupuncturist.
My advice is to start by leveraging your current doctors and expand from there. Have your doctors make new introductions and make sure they are all talking to each other. Some doctors may get defensive or offended by that…those are the ones who probably don’t have your best interest in mind. There’s no room for ego when your life is in jeopardy. It also takes time to get all of your files transferred. It’s so much easier to get an appointment as an existing patient versus a new one. I don’t think enough people realize that.
“Although I am considered to have no evidence of disease, it doesn’t mean the scans don’t still haunt me”
Katie: At a certain point I realized I was no longer in control. And that was annoying because I’ve always been a control freak. As a cancer patient, you live your life in these quarterly increments, or whatever the duration is between your scans. Sometimes it’s every two months, sometimes every three. I recently graduated to biannual scans, which was a huge deal for us.
Scanxiety is real…sometimes it’s debilitating, other times I can distract myself and push it away. I’m not sure people understand that although I am considered to have no evidence of disease (NED) it doesn’t mean the scans don’t still haunt me. It’s always in the back of my mind, and I’m sure it’s always in the back of his mind, too. It will never go away, no matter what.
During most of my thirties, I identified as a thriver. I didn’t feel like a survivor because I was still in the throes of it. I was in and out of treatments and was never told my cancer was gone. People had talked about survivor’s guilt, but I didn’t relate to it because I didn’t identify as a survivor at that point. So when I was told I was NED after surgery in 2021, it was so overwhelming. I was relieved and elated, but the surgery itself was major. I had people texting me asking to come over to celebrate and drink wine. They took out half of my liver, so I have an 11 inch incision on my abdomen. I wanted to celebrate, but I still needed to regrow my liver and recover. Any time I felt emotions that weren’t pure joy, I would beat myself up. I had this intense emotional battle post-surgery that lasted about six months, because my body was still readjusting physically from the operation. It was almost like an identity crisis. I was coming to terms with the tsunami of emotions and holding space for all of them, even the irritable, angry, or sad ones. Nick had to see me through it.
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“Toxic positivity is a real issue in the cancer community”
Katie: I know that my story inspires people, so that’s why I continue to share it. I have trauma-informed wisdom, as Oprah calls it, and I’m not going to hoard it. I want to share it so that I can help somebody in a way that my Dad helped me. But I am careful with my words because I believe that toxic positivity is a real issue in the cancer community. I try to stay positive, but I also know that the emotions on the other end of the spectrum are normal and okay—and they need to be honored.
People used to try to tell me what to do. When I was first diagnosed with uveal melanoma, a friend gave me Suzanne Somers’ book “Knockout,” which is about breast cancer. And I thought, I'm not going to read a book about breast cancer right now. It's not the same. She told me, “You have to read this book.” I carried that book with me for months and finally gave it back to her without reading it. I didn’t have the bandwidth or interest to read it. Now I am very careful with other patients. If I recommend or send them a book that I think might help them, I let them know they don’t ever have to read it and I will not be collecting a book report.
“I believe that one of the key things you need to do as a cancer patient is own the narrative”
Katie: I have a great therapist, and she's also a cancer survivor. She helped me right from the beginning. I think one of the key things that you need to do as a cancer patient is own the narrative and realize you don't need to cater to anybody else. I see people who post cancer updates on social media, and they’ll say things like, “I'm so sorry, I haven't let you guys know what's going on…” But we do not need to apologize to anyone, and we do not owe people anything. People will get updates when I am ready to share.
Early on my therapist said to me, “It sounds like word is getting out? What can we do to help you to own the narrative?” We strategized together. She helped me write a letter to my closest friends and family, and we also created a CaringBridge page.
Per her guidance, I was very direct with people on what I needed from them. I wanted people to reach out to me but not ask me any questions. I also needed people to not expect a response. I directed them to my CaringBridge page to stay updated. I'm also a very social person, so I made it clear that I couldn’t be social at that time. I was retreating to my inner circle and focused on my treatment plan and my fiancé.
Communicating all of this really helped me take some control back. Because when you're dealing with the diagnosis, you're also dodging everybody else's reaction to it.
Mantras have also become a daily part of my life. When I was in New York getting enrolled in my first trial, I’d started saying 50 times before bed, “Jesus (or universe, spirit guides, angels, or whoever it was that day) please heal me.” And then I’d say “I trust you” 50 times. And to this day, when my head hits the pillow, that's immediately what I do. If I do the math, I've said those words over a quarter of a million times. It’s really had an impact on my healing. While I do this, Nick is really great about meditating.
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“There were a lot of times when I felt very misunderstood”
Katie: Eventually I realized I couldn’t work 40 hours a week and maintain my health and well-being at the same time. I had doctor appointments, we were planning a wedding, building a house, etc. So in 2016 I cut back to a four day work week, and I’ve never gone back. It’s a boundary that has helped me create space for myself. I recognize the privilege I have, though. I’m able to get health insurance through Nick’s employer.
I used to think that getting a massage was indulgent and bougie. And maybe it is, but it is also very good for your body. I do acupuncture and get massages and facials regularly. I do Reiki energy healing. I never disregarded Western medicine - it’s a huge reason why I’m still here - but there are other things I’ve done that I believe have also contributed to my NED status. When I was first diagnosed, I read a book called Radical Remissions, about people who were told they would die and yet they beat the odds. This inspired me to incorporate alternative therapies to Western medicine.
Making self-care a consistent part of my routine was tricky to navigate. There were a lot of times when I felt very misunderstood. Nobody knows what it's like to fight for your life until you're fighting for your life. And I also think that a lot of people were projecting, and when people pass judgment, it's because they don't think they have a reason to prioritize self-care. But many people are dealing with their own trauma. The difference for me was that I could be public about mine. Some people are going through things that feel embarrassing or just not easy to talk about, so they live and suffer in silence.
I also think the US is made up of workaholics. I read somewhere recently that the 40-hour workweek was originally created with the assumption that there was one person in the household who would work, and their partner would be in the home doing the cooking and cleaning. Many people have moved away from these traditional roles, yet the 40-hour standard still persists. In many ways, I feel grateful for cancer, because it gave me the opportunity to let go of that societal norm.
Nick: In terms of my mental health, I learned pretty early on that exercise is very good for me to process things. Especially when we got engaged…at one point it really dawned on me that we couldn’t have kids. It was a hard time. But I ran it out on the treadmill. I ran so hard to help relieve some of my anger and accept what was going on. As a caregiver, it’s difficult but very important to find balance. Exercise has helped me with that. For example, when Katie had a surgery earlier this year in DC, I was staying in a hotel nearby to support her. My company was great, I was able to take leave as a caregiver. But sometimes when you think of yourself as only a caregiver, it can really drain you. I felt like I needed to be with her at the hospital from 9 in the morning until closing. But you eventually realize it’s not sustainable to do that. You can’t provide around-the-clock care for someone else because it means you’re not taking care of your own self. And you have to ensure you are taken care of before you can properly care for another.
Sitting in a hospital room is also harder than it sounds. Even if you try to get work done, it’s hard to concentrate. Your mind isn’t thinking straight, and people are running in and out of the room but there’s not much you can do. And then if you decide to take a break and go walk around, you’re afraid you’ll miss the doctor. So early on I prioritized exercise in the morning, before I’d go to the hospital or start work. It’s been a really great way to clear my mind, work my emotions through me, and enhance my focus. It’s similar to meditation, as you can think through and process what’s on your mind or what you’re feeling. It helps me stay grounded, which in turn helps me provide the best support for Kate. Eating healthy is also huge for us.
Self-care is easier said than done, especially when you’re in the thick of things. It can take time to give yourself grace and recognize the need to step back and prioritize yourself, but it’s so important. Exposure therapy is how I beat my anxiety related to this. I pushed myself outside of my comfort zone. I had to ask myself, what is best for me in this situation? We were in Pittsburgh one month for treatment and I decided to bring my helmet so I could rent a local bike. I realized it would be unproductive for me to just sit around all month as Katie had treatment. So I explored the city and it was really good for me. It comes with guilt, for sure. I’ve dealt with a lot of it. Kate would be in a hospital bed and there I was, going to a British bar in Pittsburgh and ordering some snacks to eat in the park. But I fought through it and tried to see the benefit, that having these adventures was probably good for me. And it would give me something to talk about with Kate.
Katie: I think Nick was also conscious of what other people would think. Like oh, Katie’s in the hospital while Nick is frolicking around the city. He didn’t want people to think he wasn’t supporting me. But we both recognized that he couldn’t support me if he wasn’t first supporting himself.
“The caregiver is the most underserved demographic of the cancer community, hands down”
Katie: Nick does an amazing job. You’re always making sacrifices as a caregiver. There’s one time I’ll never forget. We had just come home from a family function. We were walking our doghter, Miss Alice, and he said, “Nobody ever asks how I’m doing.” I immediately started crying. I was gutted and felt terrible. The caregiver is the most underserved demographic of the cancer community, hands down. I called my sister and said, “I need you to remember to ask Nick how he’s doing.” She felt terrible, too. I said, “Nick didn’t tell me this to make us feel bad. It’s just that everyone’s worried about me, all the while he’s the one holding me up. But nobody is holding him up.”
This is now something we talk about a lot. When we go to treatment somewhere, we prepare not just for me, but for him, too. There was one time I was in the hospital for four days and couldn’t do anything. I basically slept the entire time. I told him, come visit me, but please don’t sit here and stare at me while I sleep. Go out, get some exercise, do something. There was another time where someone set up a meal train for us. Nick thought the perception would be that if other people needed to set up meals, it must mean he wasn’t taking care of me. I assured him that that was absolutely not the case. I said, people want to help, so let them. You can’t take care of me and make dinner at the same time. So we try to see help as a gift to us, not something to feel guilty about.
Nick: Flipping the narrative really blew my mind…like the idea that people want to help. I didn’t even consider that. I just looked at myself, thinking I was fit and healthy, I should be able to cook these meals and also take you to the toilet.
Katie: This was during a time that I was that dependent on Nick.
And the lengths people will go to help you…it’s just amazing. Getting a cancer diagnosis is definitely the most humbling thing in the world. Especially if you’re a control freak like me, or someone who takes pride in feeling self-sufficient. And it turned out to be a great way for Nick to get to know some of my friends. We’ve just been really lucky. Learning to ask for help - and then feeling like you can freely allow somebody else to do something for you - is a gift.
“My Dad is the one who has helped us navigate this journey”
Katie: I've always identified both Nick and my Dad as my caregivers. Nick is my moral support. And my big spoon! He takes care of me physically and emotionally. And my Dad is the one who has helped us navigate this journey and understand the decisions we’ve had to make. I designated them both as my medical powers of attorney because I didn’t want either of them to face difficult decisions alone.
My Dad and I have always had a great relationship. My Mom died from cancer when I was 15. So this has been a highly triggering situation for my family. And my Dad was my Mom’s caregiver. So without question, he stepped right in as soon as I was diagnosed. I started calling him my agent. We’ve always been close, but we’ve gotten even closer. I have so much admiration for him. He’s my hero. He and Nick both are. I’m writing a memoir and someone read it and said “Obviously, your Dad and Nick are the heroes of this story.” I’m so lucky to have them.
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“I don’t want to hoard the wisdom I’ve gained from this horrible experience”
Katie: Nick and I are involved with the First Descents, a nonprofit that provides the healing power of adventure to young adults impacted by cancer. It’s been an incredible resource for us. I went kayaking with them in 2017 and to Croatia in 2019. Nick did their caregiver rock climbing program in 2019. We’ve found a really great community through them, and I have spoken at several of their events. I gave my first talk in 2017, giving an acceptance speech for The Courage Award from the Melanoma Research Foundation. That’s when I realized how much I loved sharing my story. It gives people hope. It now feels like it’s what I’m called to do. It’s my way of paying it forward and saying thank you to all of the people who have helped me along this journey. I don’t want to hoard the wisdom I’ve gained from this horrible experience, and expect other people to just figure it out on their own. It’s really, really hard to navigate this. If I can help just one person and change the course of their treatment for the better, then it’s worth it.
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Stay connected with Katie! Click the link below to follow her on social media, read her blogs and articles, and stay up-to-date on her book release:
https://www.liinks.co/katiedoble
Katie: I grew up in Omaha, went to college in Minnesota, and then followed my sisters out to Denver in 2008. I’ve been working as a headhunter since 2010. About four years into living in Denver, a tumor was discovered in my eyeball. There was a small window between that diagnosis and my stage four diagnosis where I met a guy named Nick (on LinkedIn, as one does!). I reached out to him because his company was hiring, and I wanted to see if I could help…but I mostly thought he was really cute. We ended up exchanging messages on LinkedIn and then I finally asked him out to “network.” He fell for it!
Nick: I grew up in England and had been living here in Denver for about a year before we crossed paths. I was living downtown, had a couple of good friends, and was still getting to know the city. She told me on our first date that she’d had cancer in her eyeball, but it never really fazed me.
Katie: It was on accident that I told him. Dating had been very challenging for me pre-and post-cancer. I wasn’t purposefully hiding it from him, but I learned it was better not to say anything. I once went out with a guy right before radiation. He said to me, “Your current situation isn't conducive to starting a romantic relationship. But if you would like to call me when all this stuff is over, I'd be game to hang out again.”
When I told Nick about my cancer on our first date, it was only because I was telling him that I had to sell my red scooter. He asked me why I sold it. I said, “Well, I can only see with one eye now. I had cancer in my eyeball, so it’s not safe for me to ride it.” And he replied, “Oh, so you had to get rid of the scooter?” He was very concerned about the scooter, but unfazed by the cancer!
Nick: Since she shared that the cancer was behind her, I wasn’t concerned. And we were having such a good time, so it never would have fazed me. It was also the first time we met, so it’s not like I was thinking “I’m going to marry this woman!” I was just really in the moment and enjoying hanging out with her.
Katie: I won the lottery with Nick. He was so different from everyone else I had dated. There were no games. It was just easy. After our first date, he texted me the next morning and asked when he’d get to see me again. It all just felt so effortless. It was very obvious that this was something special.
A year into dating, we thought my cancer was in the rearview. But then I got my stage four diagnosis—two days before Nick was planning to propose. My sisters said to him, “We don’t think you should propose right now. We need to figure out what we’re dealing with here.” He replied, “This doesn’t change anything. She’s still the girl I want to marry.”
“Statistically, this wasn’t supposed to happen”
Katie: I had been told, based on a biopsy taken during radiation treatment, that there was only a 2% chance of my cancer returning, so we felt confident that I wouldn’t have to deal with it again. I had come to terms with not having vision in my left eye and having to retire from Gaelic football because of it. I went through with a biopsy even though there was nothing we could do with the results. Some people choose not to have the biopsy; they don’t want to know the outcome. And normally I don’t want to know things either. But I wanted to know this time. I believe in science, and I believe that doctors are really trying to understand this beast of a disease. And if my cells can be a piece of the puzzle to help advance that work, then I wanted to be involved. I made this decision together with my Dad, who is a doctor of internal medicine.
It was determined that, regardless of my good biopsy results, the doctors would still monitor my lungs and liver every six months. If it were to spread, it would likely spread there. I had my first set of scans in April of 2014 – everything was clear. The crazy thing is that the doctor’s office didn’t even call to remind me to schedule my scans again six months later. You know how the gynecologist or dentist will send you a postcard in the mail reminding you to schedule an appointment? I didn’t receive that from them. I had to call them to schedule it. This reminded me how important it is to be proactive with your care.
I went in on a Tuesday morning, had the tests, and left. Later on I received a call from the oncologist herself, telling me I had 12 spots and that it could be melanoma. They wanted to biopsy my liver to be sure.
Statistically, this wasn’t supposed to happen. But someone has to be the 2%. Even though the odds of my cancer returning had been very low, it wasn’t impossible. I’m now very cautious about absorbing statistics from doctors. When I had a liver embolization in 2015, the doctor said there was a less than 1% chance of me having a hematoma. Yet I ended up having two of them.
I’ve also never Googled “uveal melanoma survival.” I believe in the power of our minds, so I don't want to hear about the worst-case scenario. I don’t want to read about likely side-effects. I don’t want any of it in my head. I always tell my doctors in clinical trials to skip over the part about side-effects. Everyone at this point knows this about me. We’re all careful about what we put out into the universe.
Nick: As a caregiver, this can be hard. Because of course I want to have some expectations of what might come up, so that I’m prepared to respond. But we’ve learned that the best thing to do is not overthink it or let it dictate your life. If side-effects occur, call your doctor and go from there.
And statistics…they are relevant to a certain extent, but not if you want to live your life. I say that because if you sit and stew on those factors, how are you ever going to actually live and enjoy the life you have? We take things day by day, and it’s really helped us. We don’t worry about the small stuff, and we focus on what our next step is, whether it’s related to the clinical trial or anything at all. This keeps us grounded and prevents things from escalating and building up in our minds. We’re very good at communicating, too. When she’s worried about something, or if I’ve got something on my mind, we have a conversation and talk through it. The more you hold it in, the more difficult it becomes. And that’s when you run into problems in a relationship or even just in your own mind.
I learned about the importance of communication when I was younger. I was diagnosed with chronic anxiety when I was 16. I used to stress the small things a lot. And it got to a point where it became very difficult and debilitating to be in social situations. I eventually learned that to handle it properly, you have to do the thing that feels the most difficult, which is to talk about it. When you can take what's in your mind and communicate it to someone else, it becomes a lot easier to manage. So now I really try to process how I feel and the way I think. When it comes to wellness, I believe you really have to think about the way you want to live your life, and you have to really want to make changes and talk about it…it’s the only way. You can’t ignore it and try not to worry about it. I’ve tried it, and it doesn’t work. There have definitely been times when I’ve felt like I wasted a lot of my life because of anxiety. But my anxiety taught me the power of communication, so I’m thankful for it.
“Our thirties were spent with me trying to not die”
Katie: We always thought we'd have a family. We didn’t talk about it at length, but it was assumed. When I got sick, we didn't dwell on it, because we were in fight or flight. It was survival time. There wasn’t time to worry about the future because we weren’t sure if it would even exist for us. We knew we needed to take things day by day. So we put kids on the back burner. We instead focused on plans that were feasible. We got married, built a house, and then I totally pulled the cancer card to get our dog, Alice!
Our thirties were spent with me trying not to die. Some years were harder than others. 2018 was the most difficult. In February, I had emergency gallbladder surgery just days before a planned hip surgery that Nick had. I also ended up getting a brain tumor and a corneal ulcer that caused temporary blindness in my seeing eye for a few days. Nick had to guide me to the bathroom. All the while, Nick’s father was dying of lung cancer. When we got back from England from the funeral, we looked at each other and knew we were hanging on by a thread. Up until that point, we had been taking things day by day. But now we were taking things minute by minute. It became an “Am I taking care of you today, or are you taking care of me?” situation. But what we maintained throughout it all was incredible communication. And…humor. We still manage to laugh our butts off! One of my lasting side effects from all of my treatments and the abdominal surgery is that it really hurts when I laugh hysterically. So when I get that keel-over, gut-wrenching laughter, I can’t breathe. And he loves it.
Nick: Well, she’ll say something that she thinks is really funny. I’ll find it annoying, but she’ll find it hilarious, and then she’ll be in pain. So I laugh because she does it to herself!
Katie: We definitely have our moments of irritation and being short with one another. But of course during the times I’m supposed to be really, really mad, I start laughing uncontrollably! Because we just don’t take things too seriously. It’s been a coping mechanism that has gotten us through some really hard times.
We also always make sure we have something to look forward to. We acknowledge the reality that plans can change, things will get canceled, and there will be disappointment. But we try to keep things on the horizon. And I think 2020 made the rest of the world realize how important that is, too. During the pandemic, everyone experienced a brief time where an illness dictated their entire life. And while most people thought everything was annoying, we were like, “Welcome to our thirties, this is how we live!” So this entire experience has just made us a lot more adaptable than we might have been otherwise.
“There's so much privilege that isn't talked about in clinical trials”
Katie: The first doctor who diagnosed me in Denver had me written off as dead. It was not a good experience. But Memorial Sloan Kettering in New York City - where I had my first clinical trial - was amazing. It’s one of the top cancer institutions in the country, so it was a phenomenal experience. I’ve been in multiple clinical trials over the past decade, but I still keep in touch with the doctor I had there. He was so present and just fully aware that his trial would not be my last. He was really thoughtful and considerate when helping us navigate this journey over the long-term. Getting into a clinical trial is stressful and not guaranteed. You have to pass all these tests that you can’t prepare for. I was really lucky.
There's so much privilege that isn't talked about in clinical trials. It cost me well over $35,000 in travel and lodging expenses over the years, which my parents and generous friends and family helped pay for. There are people who don't even consider trials because of the financial burden of travel and missing time at work, or because they're a single parent or English isn't their first language. There are just so many barriers. It’s incredibly hard to navigate. I’ve learned a lot and try to make sure other people know about the options they have. It’s why I wrote the article in HuffPost. I also learned about the Hope Lodge halfway through my treatment in NYC. Non-profits like this can alleviate some of the financial burdens of traveling for treatment.
"It’s important to establish a team early on”
Katie: I just met with somebody last week who has uveal melanoma, and I gave her some recommendations. She had planned to reach out to one doctor, but I advised her to reach out to all of them. From my experience, it’s important to establish a team early on when you’re not in desperation mode. It can take weeks or months to get in with some doctors. It’s better to be proactive and not only have the care established but know all of your options. We reached out to doctors from coast to coast. I wanted everyone in the uveal melanoma medical community to know who I was. And I have a team of alternative medicine experts, too, like my energy healer and acupuncturist.
My advice is to start by leveraging your current doctors and expand from there. Have your doctors make new introductions and make sure they are all talking to each other. Some doctors may get defensive or offended by that…those are the ones who probably don’t have your best interest in mind. There’s no room for ego when your life is in jeopardy. It also takes time to get all of your files transferred. It’s so much easier to get an appointment as an existing patient versus a new one. I don’t think enough people realize that.
“Although I am considered to have no evidence of disease, it doesn’t mean the scans don’t still haunt me”
Katie: At a certain point I realized I was no longer in control. And that was annoying because I’ve always been a control freak. As a cancer patient, you live your life in these quarterly increments, or whatever the duration is between your scans. Sometimes it’s every two months, sometimes every three. I recently graduated to biannual scans, which was a huge deal for us.
Scanxiety is real…sometimes it’s debilitating, other times I can distract myself and push it away. I’m not sure people understand that although I am considered to have no evidence of disease (NED) it doesn’t mean the scans don’t still haunt me. It’s always in the back of my mind, and I’m sure it’s always in the back of his mind, too. It will never go away, no matter what.
During most of my thirties, I identified as a thriver. I didn’t feel like a survivor because I was still in the throes of it. I was in and out of treatments and was never told my cancer was gone. People had talked about survivor’s guilt, but I didn’t relate to it because I didn’t identify as a survivor at that point. So when I was told I was NED after surgery in 2021, it was so overwhelming. I was relieved and elated, but the surgery itself was major. I had people texting me asking to come over to celebrate and drink wine. They took out half of my liver, so I have an 11 inch incision on my abdomen. I wanted to celebrate, but I still needed to regrow my liver and recover. Any time I felt emotions that weren’t pure joy, I would beat myself up. I had this intense emotional battle post-surgery that lasted about six months, because my body was still readjusting physically from the operation. It was almost like an identity crisis. I was coming to terms with the tsunami of emotions and holding space for all of them, even the irritable, angry, or sad ones. Nick had to see me through it.
“Toxic positivity is a real issue in the cancer community”
Katie: I know that my story inspires people, so that’s why I continue to share it. I have trauma-informed wisdom, as Oprah calls it, and I’m not going to hoard it. I want to share it so that I can help somebody in a way that my Dad helped me. But I am careful with my words because I believe that toxic positivity is a real issue in the cancer community. I try to stay positive, but I also know that the emotions on the other end of the spectrum are normal and okay—and they need to be honored.
People used to try to tell me what to do. When I was first diagnosed with uveal melanoma, a friend gave me Suzanne Somers’ book “Knockout,” which is about breast cancer. And I thought, I'm not going to read a book about breast cancer right now. It's not the same. She told me, “You have to read this book.” I carried that book with me for months and finally gave it back to her without reading it. I didn’t have the bandwidth or interest to read it. Now I am very careful with other patients. If I recommend or send them a book that I think might help them, I let them know they don’t ever have to read it and I will not be collecting a book report.
“I believe that one of the key things you need to do as a cancer patient is own the narrative”
Katie: I have a great therapist, and she's also a cancer survivor. She helped me right from the beginning. I think one of the key things that you need to do as a cancer patient is own the narrative and realize you don't need to cater to anybody else. I see people who post cancer updates on social media, and they’ll say things like, “I'm so sorry, I haven't let you guys know what's going on…” But we do not need to apologize to anyone, and we do not owe people anything. People will get updates when I am ready to share.
Early on my therapist said to me, “It sounds like word is getting out? What can we do to help you to own the narrative?” We strategized together. She helped me write a letter to my closest friends and family, and we also created a CaringBridge page.
Per her guidance, I was very direct with people on what I needed from them. I wanted people to reach out to me but not ask me any questions. I also needed people to not expect a response. I directed them to my CaringBridge page to stay updated. I'm also a very social person, so I made it clear that I couldn’t be social at that time. I was retreating to my inner circle and focused on my treatment plan and my fiancé.
Communicating all of this really helped me take some control back. Because when you're dealing with the diagnosis, you're also dodging everybody else's reaction to it.
Mantras have also become a daily part of my life. When I was in New York getting enrolled in my first trial, I’d started saying 50 times before bed, “Jesus (or universe, spirit guides, angels, or whoever it was that day) please heal me.” And then I’d say “I trust you” 50 times. And to this day, when my head hits the pillow, that's immediately what I do. If I do the math, I've said those words over a quarter of a million times. It’s really had an impact on my healing. While I do this, Nick is really great about meditating.
“There were a lot of times when I felt very misunderstood”
Katie: Eventually I realized I couldn’t work 40 hours a week and maintain my health and well-being at the same time. I had doctor appointments, we were planning a wedding, building a house, etc. So in 2016 I cut back to a four day work week, and I’ve never gone back. It’s a boundary that has helped me create space for myself. I recognize the privilege I have, though. I’m able to get health insurance through Nick’s employer.
I used to think that getting a massage was indulgent and bougie. And maybe it is, but it is also very good for your body. I do acupuncture and get massages and facials regularly. I do Reiki energy healing. I never disregarded Western medicine - it’s a huge reason why I’m still here - but there are other things I’ve done that I believe have also contributed to my NED status. When I was first diagnosed, I read a book called Radical Remissions, about people who were told they would die and yet they beat the odds. This inspired me to incorporate alternative therapies to Western medicine.
Making self-care a consistent part of my routine was tricky to navigate. There were a lot of times when I felt very misunderstood. Nobody knows what it's like to fight for your life until you're fighting for your life. And I also think that a lot of people were projecting, and when people pass judgment, it's because they don't think they have a reason to prioritize self-care. But many people are dealing with their own trauma. The difference for me was that I could be public about mine. Some people are going through things that feel embarrassing or just not easy to talk about, so they live and suffer in silence.
I also think the US is made up of workaholics. I read somewhere recently that the 40-hour workweek was originally created with the assumption that there was one person in the household who would work, and their partner would be in the home doing the cooking and cleaning. Many people have moved away from these traditional roles, yet the 40-hour standard still persists. In many ways, I feel grateful for cancer, because it gave me the opportunity to let go of that societal norm.
Nick: In terms of my mental health, I learned pretty early on that exercise is very good for me to process things. Especially when we got engaged…at one point it really dawned on me that we couldn’t have kids. It was a hard time. But I ran it out on the treadmill. I ran so hard to help relieve some of my anger and accept what was going on. As a caregiver, it’s difficult but very important to find balance. Exercise has helped me with that. For example, when Katie had a surgery earlier this year in DC, I was staying in a hotel nearby to support her. My company was great, I was able to take leave as a caregiver. But sometimes when you think of yourself as only a caregiver, it can really drain you. I felt like I needed to be with her at the hospital from 9 in the morning until closing. But you eventually realize it’s not sustainable to do that. You can’t provide around-the-clock care for someone else because it means you’re not taking care of your own self. And you have to ensure you are taken care of before you can properly care for another.
Sitting in a hospital room is also harder than it sounds. Even if you try to get work done, it’s hard to concentrate. Your mind isn’t thinking straight, and people are running in and out of the room but there’s not much you can do. And then if you decide to take a break and go walk around, you’re afraid you’ll miss the doctor. So early on I prioritized exercise in the morning, before I’d go to the hospital or start work. It’s been a really great way to clear my mind, work my emotions through me, and enhance my focus. It’s similar to meditation, as you can think through and process what’s on your mind or what you’re feeling. It helps me stay grounded, which in turn helps me provide the best support for Kate. Eating healthy is also huge for us.
Self-care is easier said than done, especially when you’re in the thick of things. It can take time to give yourself grace and recognize the need to step back and prioritize yourself, but it’s so important. Exposure therapy is how I beat my anxiety related to this. I pushed myself outside of my comfort zone. I had to ask myself, what is best for me in this situation? We were in Pittsburgh one month for treatment and I decided to bring my helmet so I could rent a local bike. I realized it would be unproductive for me to just sit around all month as Katie had treatment. So I explored the city and it was really good for me. It comes with guilt, for sure. I’ve dealt with a lot of it. Kate would be in a hospital bed and there I was, going to a British bar in Pittsburgh and ordering some snacks to eat in the park. But I fought through it and tried to see the benefit, that having these adventures was probably good for me. And it would give me something to talk about with Kate.
Katie: I think Nick was also conscious of what other people would think. Like oh, Katie’s in the hospital while Nick is frolicking around the city. He didn’t want people to think he wasn’t supporting me. But we both recognized that he couldn’t support me if he wasn’t first supporting himself.
“The caregiver is the most underserved demographic of the cancer community, hands down”
Katie: Nick does an amazing job. You’re always making sacrifices as a caregiver. There’s one time I’ll never forget. We had just come home from a family function. We were walking our doghter, Miss Alice, and he said, “Nobody ever asks how I’m doing.” I immediately started crying. I was gutted and felt terrible. The caregiver is the most underserved demographic of the cancer community, hands down. I called my sister and said, “I need you to remember to ask Nick how he’s doing.” She felt terrible, too. I said, “Nick didn’t tell me this to make us feel bad. It’s just that everyone’s worried about me, all the while he’s the one holding me up. But nobody is holding him up.”
This is now something we talk about a lot. When we go to treatment somewhere, we prepare not just for me, but for him, too. There was one time I was in the hospital for four days and couldn’t do anything. I basically slept the entire time. I told him, come visit me, but please don’t sit here and stare at me while I sleep. Go out, get some exercise, do something. There was another time where someone set up a meal train for us. Nick thought the perception would be that if other people needed to set up meals, it must mean he wasn’t taking care of me. I assured him that that was absolutely not the case. I said, people want to help, so let them. You can’t take care of me and make dinner at the same time. So we try to see help as a gift to us, not something to feel guilty about.
Nick: Flipping the narrative really blew my mind…like the idea that people want to help. I didn’t even consider that. I just looked at myself, thinking I was fit and healthy, I should be able to cook these meals and also take you to the toilet.
Katie: This was during a time that I was that dependent on Nick.
And the lengths people will go to help you…it’s just amazing. Getting a cancer diagnosis is definitely the most humbling thing in the world. Especially if you’re a control freak like me, or someone who takes pride in feeling self-sufficient. And it turned out to be a great way for Nick to get to know some of my friends. We’ve just been really lucky. Learning to ask for help - and then feeling like you can freely allow somebody else to do something for you - is a gift.
“My Dad is the one who has helped us navigate this journey”
Katie: I've always identified both Nick and my Dad as my caregivers. Nick is my moral support. And my big spoon! He takes care of me physically and emotionally. And my Dad is the one who has helped us navigate this journey and understand the decisions we’ve had to make. I designated them both as my medical powers of attorney because I didn’t want either of them to face difficult decisions alone.
My Dad and I have always had a great relationship. My Mom died from cancer when I was 15. So this has been a highly triggering situation for my family. And my Dad was my Mom’s caregiver. So without question, he stepped right in as soon as I was diagnosed. I started calling him my agent. We’ve always been close, but we’ve gotten even closer. I have so much admiration for him. He’s my hero. He and Nick both are. I’m writing a memoir and someone read it and said “Obviously, your Dad and Nick are the heroes of this story.” I’m so lucky to have them.
“I don’t want to hoard the wisdom I’ve gained from this horrible experience”
Katie: Nick and I are involved with the First Descents, a nonprofit that provides the healing power of adventure to young adults impacted by cancer. It’s been an incredible resource for us. I went kayaking with them in 2017 and to Croatia in 2019. Nick did their caregiver rock climbing program in 2019. We’ve found a really great community through them, and I have spoken at several of their events. I gave my first talk in 2017, giving an acceptance speech for The Courage Award from the Melanoma Research Foundation. That’s when I realized how much I loved sharing my story. It gives people hope. It now feels like it’s what I’m called to do. It’s my way of paying it forward and saying thank you to all of the people who have helped me along this journey. I don’t want to hoard the wisdom I’ve gained from this horrible experience, and expect other people to just figure it out on their own. It’s really, really hard to navigate this. If I can help just one person and change the course of their treatment for the better, then it’s worth it.
Stay connected with Katie! Click the link below to follow her on social media, read her blogs and articles, and stay up-to-date on her book release:
https://www.liinks.co/katiedoble
Katie: I grew up in Omaha, went to college in Minnesota, and then followed my sisters out to Denver in 2008. I’ve been working as a headhunter since 2010. About four years into living in Denver, a tumor was discovered in my eyeball. There was a small window between that diagnosis and my stage four diagnosis where I met a guy named Nick (on LinkedIn, as one does!). I reached out to him because his company was hiring, and I wanted to see if I could help…but I mostly thought he was really cute. We ended up exchanging messages on LinkedIn and then I finally asked him out to “network.” He fell for it!
Nick: I grew up in England and had been living here in Denver for about a year before we crossed paths. I was living downtown, had a couple of good friends, and was still getting to know the city. She told me on our first date that she’d had cancer in her eyeball, but it never really fazed me.
Katie: It was on accident that I told him. Dating had been very challenging for me pre-and post-cancer. I wasn’t purposefully hiding it from him, but I learned it was better not to say anything. I once went out with a guy right before radiation. He said to me, “Your current situation isn't conducive to starting a romantic relationship. But if you would like to call me when all this stuff is over, I'd be game to hang out again.”
When I told Nick about my cancer on our first date, it was only because I was telling him that I had to sell my red scooter. He asked me why I sold it. I said, “Well, I can only see with one eye now. I had cancer in my eyeball, so it’s not safe for me to ride it.” And he replied, “Oh, so you had to get rid of the scooter?” He was very concerned about the scooter, but unfazed by the cancer!
Nick: Since she shared that the cancer was behind her, I wasn’t concerned. And we were having such a good time, so it never would have fazed me. It was also the first time we met, so it’s not like I was thinking “I’m going to marry this woman!” I was just really in the moment and enjoying hanging out with her.
Katie: I won the lottery with Nick. He was so different from everyone else I had dated. There were no games. It was just easy. After our first date, he texted me the next morning and asked when he’d get to see me again. It all just felt so effortless. It was very obvious that this was something special.
A year into dating, we thought my cancer was in the rearview. But then I got my stage four diagnosis—two days before Nick was planning to propose. My sisters said to him, “We don’t think you should propose right now. We need to figure out what we’re dealing with here.” He replied, “This doesn’t change anything. She’s still the girl I want to marry.”
“Statistically, this wasn’t supposed to happen”
Katie: I had been told, based on a biopsy taken during radiation treatment, that there was only a 2% chance of my cancer returning, so we felt confident that I wouldn’t have to deal with it again. I had come to terms with not having vision in my left eye and having to retire from Gaelic football because of it. I went through with a biopsy even though there was nothing we could do with the results. Some people choose not to have the biopsy; they don’t want to know the outcome. And normally I don’t want to know things either. But I wanted to know this time. I believe in science, and I believe that doctors are really trying to understand this beast of a disease. And if my cells can be a piece of the puzzle to help advance that work, then I wanted to be involved. I made this decision together with my Dad, who is a doctor of internal medicine.
It was determined that, regardless of my good biopsy results, the doctors would still monitor my lungs and liver every six months. If it were to spread, it would likely spread there. I had my first set of scans in April of 2014 – everything was clear. The crazy thing is that the doctor’s office didn’t even call to remind me to schedule my scans again six months later. You know how the gynecologist or dentist will send you a postcard in the mail reminding you to schedule an appointment? I didn’t receive that from them. I had to call them to schedule it. This reminded me how important it is to be proactive with your care.
I went in on a Tuesday morning, had the tests, and left. Later on I received a call from the oncologist herself, telling me I had 12 spots and that it could be melanoma. They wanted to biopsy my liver to be sure.
Statistically, this wasn’t supposed to happen. But someone has to be the 2%. Even though the odds of my cancer returning had been very low, it wasn’t impossible. I’m now very cautious about absorbing statistics from doctors. When I had a liver embolization in 2015, the doctor said there was a less than 1% chance of me having a hematoma. Yet I ended up having two of them.
I’ve also never Googled “uveal melanoma survival.” I believe in the power of our minds, so I don't want to hear about the worst-case scenario. I don’t want to read about likely side-effects. I don’t want any of it in my head. I always tell my doctors in clinical trials to skip over the part about side-effects. Everyone at this point knows this about me. We’re all careful about what we put out into the universe.
Nick: As a caregiver, this can be hard. Because of course I want to have some expectations of what might come up, so that I’m prepared to respond. But we’ve learned that the best thing to do is not overthink it or let it dictate your life. If side-effects occur, call your doctor and go from there.
And statistics…they are relevant to a certain extent, but not if you want to live your life. I say that because if you sit and stew on those factors, how are you ever going to actually live and enjoy the life you have? We take things day by day, and it’s really helped us. We don’t worry about the small stuff, and we focus on what our next step is, whether it’s related to the clinical trial or anything at all. This keeps us grounded and prevents things from escalating and building up in our minds. We’re very good at communicating, too. When she’s worried about something, or if I’ve got something on my mind, we have a conversation and talk through it. The more you hold it in, the more difficult it becomes. And that’s when you run into problems in a relationship or even just in your own mind.
I learned about the importance of communication when I was younger. I was diagnosed with chronic anxiety when I was 16. I used to stress the small things a lot. And it got to a point where it became very difficult and debilitating to be in social situations. I eventually learned that to handle it properly, you have to do the thing that feels the most difficult, which is to talk about it. When you can take what's in your mind and communicate it to someone else, it becomes a lot easier to manage. So now I really try to process how I feel and the way I think. When it comes to wellness, I believe you really have to think about the way you want to live your life, and you have to really want to make changes and talk about it…it’s the only way. You can’t ignore it and try not to worry about it. I’ve tried it, and it doesn’t work. There have definitely been times when I’ve felt like I wasted a lot of my life because of anxiety. But my anxiety taught me the power of communication, so I’m thankful for it.
“Our thirties were spent with me trying to not die”
Katie: We always thought we'd have a family. We didn’t talk about it at length, but it was assumed. When I got sick, we didn't dwell on it, because we were in fight or flight. It was survival time. There wasn’t time to worry about the future because we weren’t sure if it would even exist for us. We knew we needed to take things day by day. So we put kids on the back burner. We instead focused on plans that were feasible. We got married, built a house, and then I totally pulled the cancer card to get our dog, Alice!
Our thirties were spent with me trying not to die. Some years were harder than others. 2018 was the most difficult. In February, I had emergency gallbladder surgery just days before a planned hip surgery that Nick had. I also ended up getting a brain tumor and a corneal ulcer that caused temporary blindness in my seeing eye for a few days. Nick had to guide me to the bathroom. All the while, Nick’s father was dying of lung cancer. When we got back from England from the funeral, we looked at each other and knew we were hanging on by a thread. Up until that point, we had been taking things day by day. But now we were taking things minute by minute. It became an “Am I taking care of you today, or are you taking care of me?” situation. But what we maintained throughout it all was incredible communication. And…humor. We still manage to laugh our butts off! One of my lasting side effects from all of my treatments and the abdominal surgery is that it really hurts when I laugh hysterically. So when I get that keel-over, gut-wrenching laughter, I can’t breathe. And he loves it.
Nick: Well, she’ll say something that she thinks is really funny. I’ll find it annoying, but she’ll find it hilarious, and then she’ll be in pain. So I laugh because she does it to herself!
Katie: We definitely have our moments of irritation and being short with one another. But of course during the times I’m supposed to be really, really mad, I start laughing uncontrollably! Because we just don’t take things too seriously. It’s been a coping mechanism that has gotten us through some really hard times.
We also always make sure we have something to look forward to. We acknowledge the reality that plans can change, things will get canceled, and there will be disappointment. But we try to keep things on the horizon. And I think 2020 made the rest of the world realize how important that is, too. During the pandemic, everyone experienced a brief time where an illness dictated their entire life. And while most people thought everything was annoying, we were like, “Welcome to our thirties, this is how we live!” So this entire experience has just made us a lot more adaptable than we might have been otherwise.
“There's so much privilege that isn't talked about in clinical trials”
Katie: The first doctor who diagnosed me in Denver had me written off as dead. It was not a good experience. But Memorial Sloan Kettering in New York City - where I had my first clinical trial - was amazing. It’s one of the top cancer institutions in the country, so it was a phenomenal experience. I’ve been in multiple clinical trials over the past decade, but I still keep in touch with the doctor I had there. He was so present and just fully aware that his trial would not be my last. He was really thoughtful and considerate when helping us navigate this journey over the long-term. Getting into a clinical trial is stressful and not guaranteed. You have to pass all these tests that you can’t prepare for. I was really lucky.
There's so much privilege that isn't talked about in clinical trials. It cost me well over $35,000 in travel and lodging expenses over the years, which my parents and generous friends and family helped pay for. There are people who don't even consider trials because of the financial burden of travel and missing time at work, or because they're a single parent or English isn't their first language. There are just so many barriers. It’s incredibly hard to navigate. I’ve learned a lot and try to make sure other people know about the options they have. It’s why I wrote the article in HuffPost. I also learned about the Hope Lodge halfway through my treatment in NYC. Non-profits like this can alleviate some of the financial burdens of traveling for treatment.
"It’s important to establish a team early on”
Katie: I just met with somebody last week who has uveal melanoma, and I gave her some recommendations. She had planned to reach out to one doctor, but I advised her to reach out to all of them. From my experience, it’s important to establish a team early on when you’re not in desperation mode. It can take weeks or months to get in with some doctors. It’s better to be proactive and not only have the care established but know all of your options. We reached out to doctors from coast to coast. I wanted everyone in the uveal melanoma medical community to know who I was. And I have a team of alternative medicine experts, too, like my energy healer and acupuncturist.
My advice is to start by leveraging your current doctors and expand from there. Have your doctors make new introductions and make sure they are all talking to each other. Some doctors may get defensive or offended by that…those are the ones who probably don’t have your best interest in mind. There’s no room for ego when your life is in jeopardy. It also takes time to get all of your files transferred. It’s so much easier to get an appointment as an existing patient versus a new one. I don’t think enough people realize that.
“Although I am considered to have no evidence of disease, it doesn’t mean the scans don’t still haunt me”
Katie: At a certain point I realized I was no longer in control. And that was annoying because I’ve always been a control freak. As a cancer patient, you live your life in these quarterly increments, or whatever the duration is between your scans. Sometimes it’s every two months, sometimes every three. I recently graduated to biannual scans, which was a huge deal for us.
Scanxiety is real…sometimes it’s debilitating, other times I can distract myself and push it away. I’m not sure people understand that although I am considered to have no evidence of disease (NED) it doesn’t mean the scans don’t still haunt me. It’s always in the back of my mind, and I’m sure it’s always in the back of his mind, too. It will never go away, no matter what.
During most of my thirties, I identified as a thriver. I didn’t feel like a survivor because I was still in the throes of it. I was in and out of treatments and was never told my cancer was gone. People had talked about survivor’s guilt, but I didn’t relate to it because I didn’t identify as a survivor at that point. So when I was told I was NED after surgery in 2021, it was so overwhelming. I was relieved and elated, but the surgery itself was major. I had people texting me asking to come over to celebrate and drink wine. They took out half of my liver, so I have an 11 inch incision on my abdomen. I wanted to celebrate, but I still needed to regrow my liver and recover. Any time I felt emotions that weren’t pure joy, I would beat myself up. I had this intense emotional battle post-surgery that lasted about six months, because my body was still readjusting physically from the operation. It was almost like an identity crisis. I was coming to terms with the tsunami of emotions and holding space for all of them, even the irritable, angry, or sad ones. Nick had to see me through it.
“Toxic positivity is a real issue in the cancer community”
Katie: I know that my story inspires people, so that’s why I continue to share it. I have trauma-informed wisdom, as Oprah calls it, and I’m not going to hoard it. I want to share it so that I can help somebody in a way that my Dad helped me. But I am careful with my words because I believe that toxic positivity is a real issue in the cancer community. I try to stay positive, but I also know that the emotions on the other end of the spectrum are normal and okay—and they need to be honored.
People used to try to tell me what to do. When I was first diagnosed with uveal melanoma, a friend gave me Suzanne Somers’ book “Knockout,” which is about breast cancer. And I thought, I'm not going to read a book about breast cancer right now. It's not the same. She told me, “You have to read this book.” I carried that book with me for months and finally gave it back to her without reading it. I didn’t have the bandwidth or interest to read it. Now I am very careful with other patients. If I recommend or send them a book that I think might help them, I let them know they don’t ever have to read it and I will not be collecting a book report.
“I believe that one of the key things you need to do as a cancer patient is own the narrative”
Katie: I have a great therapist, and she's also a cancer survivor. She helped me right from the beginning. I think one of the key things that you need to do as a cancer patient is own the narrative and realize you don't need to cater to anybody else. I see people who post cancer updates on social media, and they’ll say things like, “I'm so sorry, I haven't let you guys know what's going on…” But we do not need to apologize to anyone, and we do not owe people anything. People will get updates when I am ready to share.
Early on my therapist said to me, “It sounds like word is getting out? What can we do to help you to own the narrative?” We strategized together. She helped me write a letter to my closest friends and family, and we also created a CaringBridge page.
Per her guidance, I was very direct with people on what I needed from them. I wanted people to reach out to me but not ask me any questions. I also needed people to not expect a response. I directed them to my CaringBridge page to stay updated. I'm also a very social person, so I made it clear that I couldn’t be social at that time. I was retreating to my inner circle and focused on my treatment plan and my fiancé.
Communicating all of this really helped me take some control back. Because when you're dealing with the diagnosis, you're also dodging everybody else's reaction to it.
Mantras have also become a daily part of my life. When I was in New York getting enrolled in my first trial, I’d started saying 50 times before bed, “Jesus (or universe, spirit guides, angels, or whoever it was that day) please heal me.” And then I’d say “I trust you” 50 times. And to this day, when my head hits the pillow, that's immediately what I do. If I do the math, I've said those words over a quarter of a million times. It’s really had an impact on my healing. While I do this, Nick is really great about meditating.
“There were a lot of times when I felt very misunderstood”
Katie: Eventually I realized I couldn’t work 40 hours a week and maintain my health and well-being at the same time. I had doctor appointments, we were planning a wedding, building a house, etc. So in 2016 I cut back to a four day work week, and I’ve never gone back. It’s a boundary that has helped me create space for myself. I recognize the privilege I have, though. I’m able to get health insurance through Nick’s employer.
I used to think that getting a massage was indulgent and bougie. And maybe it is, but it is also very good for your body. I do acupuncture and get massages and facials regularly. I do Reiki energy healing. I never disregarded Western medicine - it’s a huge reason why I’m still here - but there are other things I’ve done that I believe have also contributed to my NED status. When I was first diagnosed, I read a book called Radical Remissions, about people who were told they would die and yet they beat the odds. This inspired me to incorporate alternative therapies to Western medicine.
Making self-care a consistent part of my routine was tricky to navigate. There were a lot of times when I felt very misunderstood. Nobody knows what it's like to fight for your life until you're fighting for your life. And I also think that a lot of people were projecting, and when people pass judgment, it's because they don't think they have a reason to prioritize self-care. But many people are dealing with their own trauma. The difference for me was that I could be public about mine. Some people are going through things that feel embarrassing or just not easy to talk about, so they live and suffer in silence.
I also think the US is made up of workaholics. I read somewhere recently that the 40-hour workweek was originally created with the assumption that there was one person in the household who would work, and their partner would be in the home doing the cooking and cleaning. Many people have moved away from these traditional roles, yet the 40-hour standard still persists. In many ways, I feel grateful for cancer, because it gave me the opportunity to let go of that societal norm.
Nick: In terms of my mental health, I learned pretty early on that exercise is very good for me to process things. Especially when we got engaged…at one point it really dawned on me that we couldn’t have kids. It was a hard time. But I ran it out on the treadmill. I ran so hard to help relieve some of my anger and accept what was going on. As a caregiver, it’s difficult but very important to find balance. Exercise has helped me with that. For example, when Katie had a surgery earlier this year in DC, I was staying in a hotel nearby to support her. My company was great, I was able to take leave as a caregiver. But sometimes when you think of yourself as only a caregiver, it can really drain you. I felt like I needed to be with her at the hospital from 9 in the morning until closing. But you eventually realize it’s not sustainable to do that. You can’t provide around-the-clock care for someone else because it means you’re not taking care of your own self. And you have to ensure you are taken care of before you can properly care for another.
Sitting in a hospital room is also harder than it sounds. Even if you try to get work done, it’s hard to concentrate. Your mind isn’t thinking straight, and people are running in and out of the room but there’s not much you can do. And then if you decide to take a break and go walk around, you’re afraid you’ll miss the doctor. So early on I prioritized exercise in the morning, before I’d go to the hospital or start work. It’s been a really great way to clear my mind, work my emotions through me, and enhance my focus. It’s similar to meditation, as you can think through and process what’s on your mind or what you’re feeling. It helps me stay grounded, which in turn helps me provide the best support for Kate. Eating healthy is also huge for us.
Self-care is easier said than done, especially when you’re in the thick of things. It can take time to give yourself grace and recognize the need to step back and prioritize yourself, but it’s so important. Exposure therapy is how I beat my anxiety related to this. I pushed myself outside of my comfort zone. I had to ask myself, what is best for me in this situation? We were in Pittsburgh one month for treatment and I decided to bring my helmet so I could rent a local bike. I realized it would be unproductive for me to just sit around all month as Katie had treatment. So I explored the city and it was really good for me. It comes with guilt, for sure. I’ve dealt with a lot of it. Kate would be in a hospital bed and there I was, going to a British bar in Pittsburgh and ordering some snacks to eat in the park. But I fought through it and tried to see the benefit, that having these adventures was probably good for me. And it would give me something to talk about with Kate.
Katie: I think Nick was also conscious of what other people would think. Like oh, Katie’s in the hospital while Nick is frolicking around the city. He didn’t want people to think he wasn’t supporting me. But we both recognized that he couldn’t support me if he wasn’t first supporting himself.
“The caregiver is the most underserved demographic of the cancer community, hands down”
Katie: Nick does an amazing job. You’re always making sacrifices as a caregiver. There’s one time I’ll never forget. We had just come home from a family function. We were walking our doghter, Miss Alice, and he said, “Nobody ever asks how I’m doing.” I immediately started crying. I was gutted and felt terrible. The caregiver is the most underserved demographic of the cancer community, hands down. I called my sister and said, “I need you to remember to ask Nick how he’s doing.” She felt terrible, too. I said, “Nick didn’t tell me this to make us feel bad. It’s just that everyone’s worried about me, all the while he’s the one holding me up. But nobody is holding him up.”
This is now something we talk about a lot. When we go to treatment somewhere, we prepare not just for me, but for him, too. There was one time I was in the hospital for four days and couldn’t do anything. I basically slept the entire time. I told him, come visit me, but please don’t sit here and stare at me while I sleep. Go out, get some exercise, do something. There was another time where someone set up a meal train for us. Nick thought the perception would be that if other people needed to set up meals, it must mean he wasn’t taking care of me. I assured him that that was absolutely not the case. I said, people want to help, so let them. You can’t take care of me and make dinner at the same time. So we try to see help as a gift to us, not something to feel guilty about.
Nick: Flipping the narrative really blew my mind…like the idea that people want to help. I didn’t even consider that. I just looked at myself, thinking I was fit and healthy, I should be able to cook these meals and also take you to the toilet.
Katie: This was during a time that I was that dependent on Nick.
And the lengths people will go to help you…it’s just amazing. Getting a cancer diagnosis is definitely the most humbling thing in the world. Especially if you’re a control freak like me, or someone who takes pride in feeling self-sufficient. And it turned out to be a great way for Nick to get to know some of my friends. We’ve just been really lucky. Learning to ask for help - and then feeling like you can freely allow somebody else to do something for you - is a gift.
“My Dad is the one who has helped us navigate this journey”
Katie: I've always identified both Nick and my Dad as my caregivers. Nick is my moral support. And my big spoon! He takes care of me physically and emotionally. And my Dad is the one who has helped us navigate this journey and understand the decisions we’ve had to make. I designated them both as my medical powers of attorney because I didn’t want either of them to face difficult decisions alone.
My Dad and I have always had a great relationship. My Mom died from cancer when I was 15. So this has been a highly triggering situation for my family. And my Dad was my Mom’s caregiver. So without question, he stepped right in as soon as I was diagnosed. I started calling him my agent. We’ve always been close, but we’ve gotten even closer. I have so much admiration for him. He’s my hero. He and Nick both are. I’m writing a memoir and someone read it and said “Obviously, your Dad and Nick are the heroes of this story.” I’m so lucky to have them.
“I don’t want to hoard the wisdom I’ve gained from this horrible experience”
Katie: Nick and I are involved with the First Descents, a nonprofit that provides the healing power of adventure to young adults impacted by cancer. It’s been an incredible resource for us. I went kayaking with them in 2017 and to Croatia in 2019. Nick did their caregiver rock climbing program in 2019. We’ve found a really great community through them, and I have spoken at several of their events. I gave my first talk in 2017, giving an acceptance speech for The Courage Award from the Melanoma Research Foundation. That’s when I realized how much I loved sharing my story. It gives people hope. It now feels like it’s what I’m called to do. It’s my way of paying it forward and saying thank you to all of the people who have helped me along this journey. I don’t want to hoard the wisdom I’ve gained from this horrible experience, and expect other people to just figure it out on their own. It’s really, really hard to navigate this. If I can help just one person and change the course of their treatment for the better, then it’s worth it.
Stay connected with Katie! Click the link below to follow her on social media, read her blogs and articles, and stay up-to-date on her book release:
https://www.liinks.co/katiedoble
Katie: I grew up in Omaha, went to college in Minnesota, and then followed my sisters out to Denver in 2008. I’ve been working as a headhunter since 2010. About four years into living in Denver, a tumor was discovered in my eyeball. There was a small window between that diagnosis and my stage four diagnosis where I met a guy named Nick (on LinkedIn, as one does!). I reached out to him because his company was hiring, and I wanted to see if I could help…but I mostly thought he was really cute. We ended up exchanging messages on LinkedIn and then I finally asked him out to “network.” He fell for it!
Nick: I grew up in England and had been living here in Denver for about a year before we crossed paths. I was living downtown, had a couple of good friends, and was still getting to know the city. She told me on our first date that she’d had cancer in her eyeball, but it never really fazed me.
Katie: It was on accident that I told him. Dating had been very challenging for me pre-and post-cancer. I wasn’t purposefully hiding it from him, but I learned it was better not to say anything. I once went out with a guy right before radiation. He said to me, “Your current situation isn't conducive to starting a romantic relationship. But if you would like to call me when all this stuff is over, I'd be game to hang out again.”
When I told Nick about my cancer on our first date, it was only because I was telling him that I had to sell my red scooter. He asked me why I sold it. I said, “Well, I can only see with one eye now. I had cancer in my eyeball, so it’s not safe for me to ride it.” And he replied, “Oh, so you had to get rid of the scooter?” He was very concerned about the scooter, but unfazed by the cancer!
Nick: Since she shared that the cancer was behind her, I wasn’t concerned. And we were having such a good time, so it never would have fazed me. It was also the first time we met, so it’s not like I was thinking “I’m going to marry this woman!” I was just really in the moment and enjoying hanging out with her.
Katie: I won the lottery with Nick. He was so different from everyone else I had dated. There were no games. It was just easy. After our first date, he texted me the next morning and asked when he’d get to see me again. It all just felt so effortless. It was very obvious that this was something special.
A year into dating, we thought my cancer was in the rearview. But then I got my stage four diagnosis—two days before Nick was planning to propose. My sisters said to him, “We don’t think you should propose right now. We need to figure out what we’re dealing with here.” He replied, “This doesn’t change anything. She’s still the girl I want to marry.”
“Statistically, this wasn’t supposed to happen”
Katie: I had been told, based on a biopsy taken during radiation treatment, that there was only a 2% chance of my cancer returning, so we felt confident that I wouldn’t have to deal with it again. I had come to terms with not having vision in my left eye and having to retire from Gaelic football because of it. I went through with a biopsy even though there was nothing we could do with the results. Some people choose not to have the biopsy; they don’t want to know the outcome. And normally I don’t want to know things either. But I wanted to know this time. I believe in science, and I believe that doctors are really trying to understand this beast of a disease. And if my cells can be a piece of the puzzle to help advance that work, then I wanted to be involved. I made this decision together with my Dad, who is a doctor of internal medicine.
It was determined that, regardless of my good biopsy results, the doctors would still monitor my lungs and liver every six months. If it were to spread, it would likely spread there. I had my first set of scans in April of 2014 – everything was clear. The crazy thing is that the doctor’s office didn’t even call to remind me to schedule my scans again six months later. You know how the gynecologist or dentist will send you a postcard in the mail reminding you to schedule an appointment? I didn’t receive that from them. I had to call them to schedule it. This reminded me how important it is to be proactive with your care.
I went in on a Tuesday morning, had the tests, and left. Later on I received a call from the oncologist herself, telling me I had 12 spots and that it could be melanoma. They wanted to biopsy my liver to be sure.
Statistically, this wasn’t supposed to happen. But someone has to be the 2%. Even though the odds of my cancer returning had been very low, it wasn’t impossible. I’m now very cautious about absorbing statistics from doctors. When I had a liver embolization in 2015, the doctor said there was a less than 1% chance of me having a hematoma. Yet I ended up having two of them.
I’ve also never Googled “uveal melanoma survival.” I believe in the power of our minds, so I don't want to hear about the worst-case scenario. I don’t want to read about likely side-effects. I don’t want any of it in my head. I always tell my doctors in clinical trials to skip over the part about side-effects. Everyone at this point knows this about me. We’re all careful about what we put out into the universe.
Nick: As a caregiver, this can be hard. Because of course I want to have some expectations of what might come up, so that I’m prepared to respond. But we’ve learned that the best thing to do is not overthink it or let it dictate your life. If side-effects occur, call your doctor and go from there.
And statistics…they are relevant to a certain extent, but not if you want to live your life. I say that because if you sit and stew on those factors, how are you ever going to actually live and enjoy the life you have? We take things day by day, and it’s really helped us. We don’t worry about the small stuff, and we focus on what our next step is, whether it’s related to the clinical trial or anything at all. This keeps us grounded and prevents things from escalating and building up in our minds. We’re very good at communicating, too. When she’s worried about something, or if I’ve got something on my mind, we have a conversation and talk through it. The more you hold it in, the more difficult it becomes. And that’s when you run into problems in a relationship or even just in your own mind.
I learned about the importance of communication when I was younger. I was diagnosed with chronic anxiety when I was 16. I used to stress the small things a lot. And it got to a point where it became very difficult and debilitating to be in social situations. I eventually learned that to handle it properly, you have to do the thing that feels the most difficult, which is to talk about it. When you can take what's in your mind and communicate it to someone else, it becomes a lot easier to manage. So now I really try to process how I feel and the way I think. When it comes to wellness, I believe you really have to think about the way you want to live your life, and you have to really want to make changes and talk about it…it’s the only way. You can’t ignore it and try not to worry about it. I’ve tried it, and it doesn’t work. There have definitely been times when I’ve felt like I wasted a lot of my life because of anxiety. But my anxiety taught me the power of communication, so I’m thankful for it.
“Our thirties were spent with me trying to not die”
Katie: We always thought we'd have a family. We didn’t talk about it at length, but it was assumed. When I got sick, we didn't dwell on it, because we were in fight or flight. It was survival time. There wasn’t time to worry about the future because we weren’t sure if it would even exist for us. We knew we needed to take things day by day. So we put kids on the back burner. We instead focused on plans that were feasible. We got married, built a house, and then I totally pulled the cancer card to get our dog, Alice!
Our thirties were spent with me trying not to die. Some years were harder than others. 2018 was the most difficult. In February, I had emergency gallbladder surgery just days before a planned hip surgery that Nick had. I also ended up getting a brain tumor and a corneal ulcer that caused temporary blindness in my seeing eye for a few days. Nick had to guide me to the bathroom. All the while, Nick’s father was dying of lung cancer. When we got back from England from the funeral, we looked at each other and knew we were hanging on by a thread. Up until that point, we had been taking things day by day. But now we were taking things minute by minute. It became an “Am I taking care of you today, or are you taking care of me?” situation. But what we maintained throughout it all was incredible communication. And…humor. We still manage to laugh our butts off! One of my lasting side effects from all of my treatments and the abdominal surgery is that it really hurts when I laugh hysterically. So when I get that keel-over, gut-wrenching laughter, I can’t breathe. And he loves it.
Nick: Well, she’ll say something that she thinks is really funny. I’ll find it annoying, but she’ll find it hilarious, and then she’ll be in pain. So I laugh because she does it to herself!
Katie: We definitely have our moments of irritation and being short with one another. But of course during the times I’m supposed to be really, really mad, I start laughing uncontrollably! Because we just don’t take things too seriously. It’s been a coping mechanism that has gotten us through some really hard times.
We also always make sure we have something to look forward to. We acknowledge the reality that plans can change, things will get canceled, and there will be disappointment. But we try to keep things on the horizon. And I think 2020 made the rest of the world realize how important that is, too. During the pandemic, everyone experienced a brief time where an illness dictated their entire life. And while most people thought everything was annoying, we were like, “Welcome to our thirties, this is how we live!” So this entire experience has just made us a lot more adaptable than we might have been otherwise.
“There's so much privilege that isn't talked about in clinical trials”
Katie: The first doctor who diagnosed me in Denver had me written off as dead. It was not a good experience. But Memorial Sloan Kettering in New York City - where I had my first clinical trial - was amazing. It’s one of the top cancer institutions in the country, so it was a phenomenal experience. I’ve been in multiple clinical trials over the past decade, but I still keep in touch with the doctor I had there. He was so present and just fully aware that his trial would not be my last. He was really thoughtful and considerate when helping us navigate this journey over the long-term. Getting into a clinical trial is stressful and not guaranteed. You have to pass all these tests that you can’t prepare for. I was really lucky.
There's so much privilege that isn't talked about in clinical trials. It cost me well over $35,000 in travel and lodging expenses over the years, which my parents and generous friends and family helped pay for. There are people who don't even consider trials because of the financial burden of travel and missing time at work, or because they're a single parent or English isn't their first language. There are just so many barriers. It’s incredibly hard to navigate. I’ve learned a lot and try to make sure other people know about the options they have. It’s why I wrote the article in HuffPost. I also learned about the Hope Lodge halfway through my treatment in NYC. Non-profits like this can alleviate some of the financial burdens of traveling for treatment.
"It’s important to establish a team early on”
Katie: I just met with somebody last week who has uveal melanoma, and I gave her some recommendations. She had planned to reach out to one doctor, but I advised her to reach out to all of them. From my experience, it’s important to establish a team early on when you’re not in desperation mode. It can take weeks or months to get in with some doctors. It’s better to be proactive and not only have the care established but know all of your options. We reached out to doctors from coast to coast. I wanted everyone in the uveal melanoma medical community to know who I was. And I have a team of alternative medicine experts, too, like my energy healer and acupuncturist.
My advice is to start by leveraging your current doctors and expand from there. Have your doctors make new introductions and make sure they are all talking to each other. Some doctors may get defensive or offended by that…those are the ones who probably don’t have your best interest in mind. There’s no room for ego when your life is in jeopardy. It also takes time to get all of your files transferred. It’s so much easier to get an appointment as an existing patient versus a new one. I don’t think enough people realize that.
“Although I am considered to have no evidence of disease, it doesn’t mean the scans don’t still haunt me”
Katie: At a certain point I realized I was no longer in control. And that was annoying because I’ve always been a control freak. As a cancer patient, you live your life in these quarterly increments, or whatever the duration is between your scans. Sometimes it’s every two months, sometimes every three. I recently graduated to biannual scans, which was a huge deal for us.
Scanxiety is real…sometimes it’s debilitating, other times I can distract myself and push it away. I’m not sure people understand that although I am considered to have no evidence of disease (NED) it doesn’t mean the scans don’t still haunt me. It’s always in the back of my mind, and I’m sure it’s always in the back of his mind, too. It will never go away, no matter what.
During most of my thirties, I identified as a thriver. I didn’t feel like a survivor because I was still in the throes of it. I was in and out of treatments and was never told my cancer was gone. People had talked about survivor’s guilt, but I didn’t relate to it because I didn’t identify as a survivor at that point. So when I was told I was NED after surgery in 2021, it was so overwhelming. I was relieved and elated, but the surgery itself was major. I had people texting me asking to come over to celebrate and drink wine. They took out half of my liver, so I have an 11 inch incision on my abdomen. I wanted to celebrate, but I still needed to regrow my liver and recover. Any time I felt emotions that weren’t pure joy, I would beat myself up. I had this intense emotional battle post-surgery that lasted about six months, because my body was still readjusting physically from the operation. It was almost like an identity crisis. I was coming to terms with the tsunami of emotions and holding space for all of them, even the irritable, angry, or sad ones. Nick had to see me through it.
“Toxic positivity is a real issue in the cancer community”
Katie: I know that my story inspires people, so that’s why I continue to share it. I have trauma-informed wisdom, as Oprah calls it, and I’m not going to hoard it. I want to share it so that I can help somebody in a way that my Dad helped me. But I am careful with my words because I believe that toxic positivity is a real issue in the cancer community. I try to stay positive, but I also know that the emotions on the other end of the spectrum are normal and okay—and they need to be honored.
People used to try to tell me what to do. When I was first diagnosed with uveal melanoma, a friend gave me Suzanne Somers’ book “Knockout,” which is about breast cancer. And I thought, I'm not going to read a book about breast cancer right now. It's not the same. She told me, “You have to read this book.” I carried that book with me for months and finally gave it back to her without reading it. I didn’t have the bandwidth or interest to read it. Now I am very careful with other patients. If I recommend or send them a book that I think might help them, I let them know they don’t ever have to read it and I will not be collecting a book report.
“I believe that one of the key things you need to do as a cancer patient is own the narrative”
Katie: I have a great therapist, and she's also a cancer survivor. She helped me right from the beginning. I think one of the key things that you need to do as a cancer patient is own the narrative and realize you don't need to cater to anybody else. I see people who post cancer updates on social media, and they’ll say things like, “I'm so sorry, I haven't let you guys know what's going on…” But we do not need to apologize to anyone, and we do not owe people anything. People will get updates when I am ready to share.
Early on my therapist said to me, “It sounds like word is getting out? What can we do to help you to own the narrative?” We strategized together. She helped me write a letter to my closest friends and family, and we also created a CaringBridge page.
Per her guidance, I was very direct with people on what I needed from them. I wanted people to reach out to me but not ask me any questions. I also needed people to not expect a response. I directed them to my CaringBridge page to stay updated. I'm also a very social person, so I made it clear that I couldn’t be social at that time. I was retreating to my inner circle and focused on my treatment plan and my fiancé.
Communicating all of this really helped me take some control back. Because when you're dealing with the diagnosis, you're also dodging everybody else's reaction to it.
Mantras have also become a daily part of my life. When I was in New York getting enrolled in my first trial, I’d started saying 50 times before bed, “Jesus (or universe, spirit guides, angels, or whoever it was that day) please heal me.” And then I’d say “I trust you” 50 times. And to this day, when my head hits the pillow, that's immediately what I do. If I do the math, I've said those words over a quarter of a million times. It’s really had an impact on my healing. While I do this, Nick is really great about meditating.
“There were a lot of times when I felt very misunderstood”
Katie: Eventually I realized I couldn’t work 40 hours a week and maintain my health and well-being at the same time. I had doctor appointments, we were planning a wedding, building a house, etc. So in 2016 I cut back to a four day work week, and I’ve never gone back. It’s a boundary that has helped me create space for myself. I recognize the privilege I have, though. I’m able to get health insurance through Nick’s employer.
I used to think that getting a massage was indulgent and bougie. And maybe it is, but it is also very good for your body. I do acupuncture and get massages and facials regularly. I do Reiki energy healing. I never disregarded Western medicine - it’s a huge reason why I’m still here - but there are other things I’ve done that I believe have also contributed to my NED status. When I was first diagnosed, I read a book called Radical Remissions, about people who were told they would die and yet they beat the odds. This inspired me to incorporate alternative therapies to Western medicine.
Making self-care a consistent part of my routine was tricky to navigate. There were a lot of times when I felt very misunderstood. Nobody knows what it's like to fight for your life until you're fighting for your life. And I also think that a lot of people were projecting, and when people pass judgment, it's because they don't think they have a reason to prioritize self-care. But many people are dealing with their own trauma. The difference for me was that I could be public about mine. Some people are going through things that feel embarrassing or just not easy to talk about, so they live and suffer in silence.
I also think the US is made up of workaholics. I read somewhere recently that the 40-hour workweek was originally created with the assumption that there was one person in the household who would work, and their partner would be in the home doing the cooking and cleaning. Many people have moved away from these traditional roles, yet the 40-hour standard still persists. In many ways, I feel grateful for cancer, because it gave me the opportunity to let go of that societal norm.
Nick: In terms of my mental health, I learned pretty early on that exercise is very good for me to process things. Especially when we got engaged…at one point it really dawned on me that we couldn’t have kids. It was a hard time. But I ran it out on the treadmill. I ran so hard to help relieve some of my anger and accept what was going on. As a caregiver, it’s difficult but very important to find balance. Exercise has helped me with that. For example, when Katie had a surgery earlier this year in DC, I was staying in a hotel nearby to support her. My company was great, I was able to take leave as a caregiver. But sometimes when you think of yourself as only a caregiver, it can really drain you. I felt like I needed to be with her at the hospital from 9 in the morning until closing. But you eventually realize it’s not sustainable to do that. You can’t provide around-the-clock care for someone else because it means you’re not taking care of your own self. And you have to ensure you are taken care of before you can properly care for another.
Sitting in a hospital room is also harder than it sounds. Even if you try to get work done, it’s hard to concentrate. Your mind isn’t thinking straight, and people are running in and out of the room but there’s not much you can do. And then if you decide to take a break and go walk around, you’re afraid you’ll miss the doctor. So early on I prioritized exercise in the morning, before I’d go to the hospital or start work. It’s been a really great way to clear my mind, work my emotions through me, and enhance my focus. It’s similar to meditation, as you can think through and process what’s on your mind or what you’re feeling. It helps me stay grounded, which in turn helps me provide the best support for Kate. Eating healthy is also huge for us.
Self-care is easier said than done, especially when you’re in the thick of things. It can take time to give yourself grace and recognize the need to step back and prioritize yourself, but it’s so important. Exposure therapy is how I beat my anxiety related to this. I pushed myself outside of my comfort zone. I had to ask myself, what is best for me in this situation? We were in Pittsburgh one month for treatment and I decided to bring my helmet so I could rent a local bike. I realized it would be unproductive for me to just sit around all month as Katie had treatment. So I explored the city and it was really good for me. It comes with guilt, for sure. I’ve dealt with a lot of it. Kate would be in a hospital bed and there I was, going to a British bar in Pittsburgh and ordering some snacks to eat in the park. But I fought through it and tried to see the benefit, that having these adventures was probably good for me. And it would give me something to talk about with Kate.
Katie: I think Nick was also conscious of what other people would think. Like oh, Katie’s in the hospital while Nick is frolicking around the city. He didn’t want people to think he wasn’t supporting me. But we both recognized that he couldn’t support me if he wasn’t first supporting himself.
“The caregiver is the most underserved demographic of the cancer community, hands down”
Katie: Nick does an amazing job. You’re always making sacrifices as a caregiver. There’s one time I’ll never forget. We had just come home from a family function. We were walking our doghter, Miss Alice, and he said, “Nobody ever asks how I’m doing.” I immediately started crying. I was gutted and felt terrible. The caregiver is the most underserved demographic of the cancer community, hands down. I called my sister and said, “I need you to remember to ask Nick how he’s doing.” She felt terrible, too. I said, “Nick didn’t tell me this to make us feel bad. It’s just that everyone’s worried about me, all the while he’s the one holding me up. But nobody is holding him up.”
This is now something we talk about a lot. When we go to treatment somewhere, we prepare not just for me, but for him, too. There was one time I was in the hospital for four days and couldn’t do anything. I basically slept the entire time. I told him, come visit me, but please don’t sit here and stare at me while I sleep. Go out, get some exercise, do something. There was another time where someone set up a meal train for us. Nick thought the perception would be that if other people needed to set up meals, it must mean he wasn’t taking care of me. I assured him that that was absolutely not the case. I said, people want to help, so let them. You can’t take care of me and make dinner at the same time. So we try to see help as a gift to us, not something to feel guilty about.
Nick: Flipping the narrative really blew my mind…like the idea that people want to help. I didn’t even consider that. I just looked at myself, thinking I was fit and healthy, I should be able to cook these meals and also take you to the toilet.
Katie: This was during a time that I was that dependent on Nick.
And the lengths people will go to help you…it’s just amazing. Getting a cancer diagnosis is definitely the most humbling thing in the world. Especially if you’re a control freak like me, or someone who takes pride in feeling self-sufficient. And it turned out to be a great way for Nick to get to know some of my friends. We’ve just been really lucky. Learning to ask for help - and then feeling like you can freely allow somebody else to do something for you - is a gift.
“My Dad is the one who has helped us navigate this journey”
Katie: I've always identified both Nick and my Dad as my caregivers. Nick is my moral support. And my big spoon! He takes care of me physically and emotionally. And my Dad is the one who has helped us navigate this journey and understand the decisions we’ve had to make. I designated them both as my medical powers of attorney because I didn’t want either of them to face difficult decisions alone.
My Dad and I have always had a great relationship. My Mom died from cancer when I was 15. So this has been a highly triggering situation for my family. And my Dad was my Mom’s caregiver. So without question, he stepped right in as soon as I was diagnosed. I started calling him my agent. We’ve always been close, but we’ve gotten even closer. I have so much admiration for him. He’s my hero. He and Nick both are. I’m writing a memoir and someone read it and said “Obviously, your Dad and Nick are the heroes of this story.” I’m so lucky to have them.
“I don’t want to hoard the wisdom I’ve gained from this horrible experience”
Katie: Nick and I are involved with the First Descents, a nonprofit that provides the healing power of adventure to young adults impacted by cancer. It’s been an incredible resource for us. I went kayaking with them in 2017 and to Croatia in 2019. Nick did their caregiver rock climbing program in 2019. We’ve found a really great community through them, and I have spoken at several of their events. I gave my first talk in 2017, giving an acceptance speech for The Courage Award from the Melanoma Research Foundation. That’s when I realized how much I loved sharing my story. It gives people hope. It now feels like it’s what I’m called to do. It’s my way of paying it forward and saying thank you to all of the people who have helped me along this journey. I don’t want to hoard the wisdom I’ve gained from this horrible experience, and expect other people to just figure it out on their own. It’s really, really hard to navigate this. If I can help just one person and change the course of their treatment for the better, then it’s worth it.
Stay connected with Katie! Click the link below to follow her on social media, read her blogs and articles, and stay up-to-date on her book release:
https://www.liinks.co/katiedoble
Nick: The most difficult thing as a caregiver is not feeling seen. You can be in a hospital room with people walking in and out, and none of them will pay any attention to you. It can be quite isolating. What has helped me is putting myself out there by introducing myself. It helps build rapport and they will start to recognize you. Ultimately, the job of nurses is to care for the patient. They don’t really have your interests as a caregiver in mind. This is definitely an area of improvement that hospitals should make. Because it’s one of the nicest feelings in the world when someone acknowledges you and asks if there’s anything they can do for you. Nurses are often running between rooms with their pagers going off constantly. So I am of course thoughtful about my timing. But when an opportunity presents itself, I take a moment to introduce myself and it makes me feel better.
I’ve also talked a lot about the role that fitness has played for me. I think what’s most important to remember is that even if you don’t have the time to move your body with the intensity that you’d really like to, that doesn’t need to stop you. Fitness and well-being can be as simple as going for a walk or doing a short meditation. You don’t need to get into an actual gym or do anything that’s time-consuming. Just figure out what works for you. And be kind to yourself. Easier said than done, but try to give yourself breaks. It’s okay to sit and watch a ridiculous movie or TV show, even while your partner is in a hospital room having treatment. If you can be gracious and patient with yourself, it will help you take the right steps to support yourself, which ultimately results in better care for your loved one.
Katie: Remember that you still deserve joy. Allow yourself to enjoy even the smallest things in life. Because when you’re dealing with the big things in life, you have to recognize even the tiniest moments of joy and laughter. It’s okay to be happy even when things are really bad. Those moments of laughter when I can’t breathe…those are my favorite moments in life. You only laugh that hard when you’re in the best company, and that’s something to find joy in.
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.
