Embracing You Podcast: Daniel Hight
Our founder Daniel Hight joins Eric Pothen on his Embracing You podcast to share his story about his renewed fitness journey and his perception of his body.
More Than Our Story
Mikaela Barnes
Mikaela Barnes shares her journey with Type 2B/C adenocarcinoma and metastatic disease. She talks about her two life-changing surgeries and the treatments she continues to endure, her exploration of alternative therapies, her steadfast optimism, and her refusal to let her disease define what she’s capable of.
Highlights
In 2020, I secured my Boston (Marathon) qualification. I completed the BMO Vancouver Marathon in 2019, and then COVID hit. So I was in a bit of a holding pattern, wanting to certainly have the Boston experience that everybody dreams of. I was training quite intensely for marathons at that time.
Navigating the early days of the pandemic, preparing for our wedding. My now husband and I were engaged at the time; our wedding was scheduled for the summer of 2021. In the months leading up to our wedding day, I started to get some pretty benign symptoms. Urgently rushing to the bathroom, I thought it was a digestive irritation or sensitivity of some kind, but unfortunately, the symptoms continued. A couple of weeks leading up to our wedding day, I had quite extensive investigations because there was a palpable mass right at the end of my digestive tract, so I could actually feel it; it was in the lowest part of my rectum.
Four days before our wedding, I was diagnosed with Type 2B/C adenocarcinoma, rectal cancer. We got married, and then the following week, I just sort of jumped right into all the medical treatment I needed, which included egg harvesting to preserve fertility going forward and meeting my oncology team for the first time.
I think there's likely some sort of genetic hereditary component that's probably just not identifiable at this point-in-time... My family has a history of colon and rectal cancer on my mom's side. So, I do have two relatives who have been diagnosed with colon cancer.
One of the most powerful things that was said to me, and this was very early on... It was a week after my diagnosis... It was 8:04 in the morning; you just never forget those snapshots in time when that happens. We got married on Sunday, and then the following week, I met my surgeon for the first time... I remember walking into the room... and the first thing that he said when I walked into the room was, “This was not your fault." And I don't know if I fully believed him at the time. I think that's something that I've had to work through a lot. That was the first thing he's ever said to me, and I've never forgotten it. And that's been something that I've leaned on whenever I get into those sorts of why-me spirals.
I had my diagnosis in July of 2021. I had eggs harvested very quickly, so we have seven embryos that are frozen and waiting for us when we're ready, which is really exciting.
The timing of that was really critical because I was able to complete fertility preservation prior to meeting with my oncology team, where they outlined what was going to be the best treatment in terms of survivorship and, ideally, not having a recurrence or not having metastatic disease.
My initial treatment involved radiation and chemotherapy. The goal was that between (those), I could potentially eradicate the disease such that I wouldn't need surgery... Having pelvic radiation would mean that I would not be able to carry a pregnancy because my uterus can't be protected from the radiation field.
I had five weeks of radiation treatment, so that was five days a week for five weeks, and then I had four and a half months or nine cycles of chemotherapy. What that looked like was a Friday, Saturday, Sunday. So I'd go in for treatment on a Friday, which would be 1 or 2 medications through an IV bag. And then, I would leave with an infuser bottle that would slowly infuse the medication over 46 to 48 hours. So, every other weekend was a chemo weekend.
One of the perks of being in the triathlon world was that one of the clothing items that I relied on heavily was my bike jersey because the bottle slides into (it). I don't have to get tangled up in the tubing when I'm trying to go to the bathroom and things like that. So I ended up wearing bike jerseys most of my chemo weekends just because the storage for the bottle is so convenient.
(After) I completed those nine cycles of chemo; I did have a complete response, which happens to 30% of individuals... So, at that point in time, I could elect to have the surgery anyway, even though there was nothing there that they could detect on imaging, or I could enter a watch-and-wait protocol, and if something were to return, then I would have the surgery.
The surgery was no walk in the park because of how low my cancer was initially... Having a temporary ostomy and then a reconnection after wasn't possible. I would have a permanent colostomy going forward. So there was certainly a big decision to be made with that. It wasn't a simple surgery. It was quite a significant surgery, life-changing in terms of just navigating my body in a different way. Given all the factors in my favor, I did enter the watch and weight protocol. I had three months of clear scans. Six months, it had come back. So then, in September of 2022, I did have the surgery, resulting in a permanent colostomy.
(The week of surgery) was the deadline to apply for the Boston Marathon in 2023. At the time, I could barely stand for five seconds. I think I was walking the length of the hallway, So no more than maybe 100m. I put in my application for the Boston Marathon and was accepted. So, seven months after my surgery, I ran my best marathon time on record so far, three hours and eight minutes, in Boston. And it was amazing. At that time, I had no evidence of disease.
(After the marathon) I had clear scans at three, six, and nine months, and then, approaching the one-year mark, I started to get pain with sitting. It turns out that there was a new pelvic mass in my pelvic floor muscles next to where my rectum used to be. So, in the fall of 2023, I resumed chemotherapy, which I did for six months. They added an immunotherapy, which was viciously hard to tolerate in terms of side effects. Ultimately shrinking the two lesions that were actually in my pelvis.
Then, I had another surgery in May of 2024. That surgery even though I would have said the first surgery I had was a major surgery, this was above and beyond in terms of a major surgery. I had two grafts. One non-muscle graph on the back of my hip to help fill the space where they resected most of my posterior pelvic floor muscles, and then I also had (a graft) part of my rectus abdominis, my six-pack muscle on the right side of my abdomen. They kept the lower portion attached and flipped it down into my pelvis.
After that surgery in May, I am (now) up to running 10K at this point. I rock climb with my husband. I go to Pilates classes. I think whether it be specific to recovering from surgery or just pursuing a marathon, I just get so inspired to find out what my body's capable of.
I just want to know what my fullest potential is. I don't feel that there's a limitation. It's just a matter of time and putting in the practice, putting in the mundane exercises, to build up my capacity again.
Three months after my surgery, lymph nodes in my groin became really enlarged, and I had some imaging done, and it confirmed that I had metastatic disease.
They found some metastatic disease in my lungs, potentially the bone of my pelvis, and there were also a few masses in my pelvis again. So, I resumed chemotherapy in the fall. I've been having chemotherapy every other week and am now navigating the metastatic chapter of this story.
It's still not quite linear and clear yet. A little bit in the gray zone, but I'm feeling well. I just finished a cycle of chemo yesterday. I'm hoping to run a half marathon in a couple of months in May, back at BMO here in Vancouver. Just taking it one day at a time.
On maintaining her optimism:
I feel like there's so many layers to that. I think back to some of the key coaches I had in my early days getting into sports. I mean, there's the mental grit that comes from training for those types of events... I had phenomenal coaches who really taught me how to put my head down and work hard. It doesn't have to be flashy or fancy; it's just doing the things that can build up your strength and resilience... I feel like another dimension of it is my knowledge of being a pelvic health physiotherapist. There have been moments where having that deeper knowledge has been really helpful in navigating treatment and minimizing side effects. The third piece is this deep, unwavering belief that if anyone can prove the numbers wrong, it's me.
I'm young; I don't have any other comorbidities. Yes, certainly, this disease can present more aggressively in younger individuals, but I've tolerated treatment really well. When presented with this metastatic chapter, it's very much a game of patience. It's very much a long game, and I kind of feel like all the sports that I participated in at this point have very much been about that... I just approach this like the unique marathon that it is, one kilometer at a time.
It is not to say that I have cultivated this optimism and hope alone. I have an incredible medical support team, and I know it's not the case for everyone where their medical team kind of feels accessible and supportive. But I've had a very positive relationship with my medical team, and I know wholeheartedly that that's made a big difference in my confidence in navigating each step.
What I've explored has been acupuncture. Since getting my metastatic diagnosis at the end of the summer, I was referred to a practitioner here in Vancouver who exclusively sees stage four metastatic recurrent cancer patients. When I was first presented with this metastatic prognosis and given 2-to-4 years to live, it was like the ground fell out from underneath me again. I kind of thought I was through that or past that. It was as unsettling as the initial diagnosis was at the beginning. And when I met my acupuncturist, the biggest gift he gave me was permission to heal. Like I said, I have that unwavering belief, but I feel like it was depressed, put away in a box somewhere, and I couldn't access it when I got my metastatic prognosis. Working with my acupuncturist, I am managing the side effects of chemo so much better, and my sleep is phenomenal. My energy is comparable to that of my pre-diagnosis self. He gave me permission to heal and help restore that unwavering sense of belief that I can do this, that I can beat the odds, and I'm eternally grateful for that.
The acupuncture treatment that I've been receiving is a Japanese style. The approach is fewer needles for a greater response. They're really superficial, just a couple millimeters into the skin, so not into muscle, not anything deep. (It's) not to treat pain but to help optimize the immune system and organ function.
Every two weeks, I have bloodwork... to see how low my counts drop. If my counts don't recover between chemo cycles, I'd have to delay the cycle. In the three-plus years prior to acupuncture, I would always just get above the minimum. It felt like with every chemo cycle, it's a little bit harder to just get past that threshold. So you sort of felt like you were hanging on and not in a good way. Now, with acupuncture, my blood counts have been mid-range, higher than they've ever been before... It's just not even a variable I'm concerned about anymore. I'm blown away, and I think mentally not being concerned about that... I think mentally, that does a lot.
I would say pre-diagnosis I'm an optimist for sure. That's not to say that my optimism hasn't been challenged to the highest degree over the last four years because it absolutely has... I have a very real understanding of the factors at play, the diagnosis, and the prognosis that I'm navigating. So, it's not from a place of denial. It's very much like I accept the cards that I've been dealt. Whether or not I could have influenced how they unfolded, I'll never know. But all I can do is take care of myself in the present and look towards the future.
I think there's been a huge amount of growth in terms of allowing myself time to grieve. It's not that by grieving or having days that feel hard or frustrating that I'm any less optimistic; that's just me being a human. Humans are allowed to create all of those emotions... I now allow myself time to experience the full spectrum of emotions, and I think that actually fuels me forward versus allowing me to get stuck in the past or to spiral in states that are unhelpful.
On what her experience has taught her:
To slow down, to really enjoy the present moment. To get joy out of the mundane and soak up whatever I can out of each day. Each day is a gift. I don't know what tomorrow is going to bring or the day after that. So I think that's a huge piece, and then in the moments where I am not feeling my best, I just remind myself, this too shall pass. I can think of times when I was lying in the hospital, and the idea of standing to walk to the bathroom was a marathon. Just trust. Keep trying, and it'll get a little bit easier. Those hard moments will pass.
When facing a challenge of your own, especially if there's a hardship associated with it... (First) is you need to feel it all. You need to be in a safe place where you can just let all the emotions surface the good, the bad, the ugly. As much as it'd be lovely if it was a one-and-done, it's not going to be. You're probably going to have to do that multiple times. But there is something really freeing about letting those emotions go versus letting them be suppressed or ruminate inside... (Secondly) find your people, the sense of community, and support that can help you through it... (Lastly) you can't throw everything at yourself all at once. I think there's this element of getting into a bit of a groove, especially if it's a long journey ahead... you can always add; it feels better to add than to take away.
I have an ostomy that, for me, was a very unsettling possibility. What would my life look like? What would I physically be able to do? How would my life be different with an ostomy?
There's been moments where you kind of have to lean into the unknown, and you're not sure what to expect on the other side. One of the things that I did when I was preparing mentally for potentially needing surgery that resulted in an ostomy is I googled marathon running with an ostomy; I thought, if I can run a marathon with an ostomy, I can do everything else... I found this incredible individual in the States who has an ostomy and has run marathons, and we met up and just chatted it out, and that gave me just such confidence that if I need that surgery, that's not going to be a hindrance.
An ostomy is not going to be a barrier in terms of getting back to the things you would enjoy in isolation... an ostomy itself is an incredible tool. Whether that be navigating digestive challenges, whether that be related to cancer, you can rebuild your core, you can rebuild your movement patterns, and get back to the things that you want to do.
There's nothing I can't do now that I couldn't before other than use the toilet like someone without an ostomy. I hope that if someone was in a similar position to me and the surgery was presented as a life-saving solution, they could confidently go forward and say, "I'm going to do this because I know it's going to give me years to my life and not going to hinder the quality of my life."
The other piece I want to share is how important it is to take care of your body right now. What can I do today? What can I do this week to help preserve my body's ability to take this on for the long run? What will give me the best shot at being here to experience potential opportunities that aren't tangible yet?
We have one home, one body to take care of, and I think that one of the biggest gifts is this opportunity to take care of this vessel and see what's possible.
Daniel
Daniel is an extremely curious person, a wealth of random knowledge and facts. Extremely passionate about a vast array of interests ranging from health to history, science to athletics, everything culinary and the list goes on. Trust us, you would want to be on his team for Trivial Pursuit.
Daniel is also years into his battle with brain cancer. He experienced a seizure while on a Zoom call at work in late 2020 and quite literally, his life changed within minutes. After his operation he started to talk about his story but had always known it was more than just him. From then, More Than Our Story became a PROJECT that has evolved into the starting point it is today.
Additional Profiles
Eric Pothen
Eric shares his story from struggling with an eating disorder, to coaching people to help heal their relationship with food and their bodies.
Ryan Stark
Ryan shares his love of being creative, debunks some of the myths surrounding diabetes, and about what it's like living with this condition.
Kieren O’Hanlon
Kieren opens up about his health challenges, and how he is still perfecting the balance of being a loving husband, father and his well-being.
Eric Duplain
Eric Duplain defines generosity, kindness and selflessness, and possesses the sheer determination and talent to master whatever he sets his mind to.
Ned Phillips
Ned shares his love for ultrarunning and where his mind goes when faced with the immense physical and mental strain that comes along with it.
Ruthie Sloan
Ruthie shares her story of courage and determination as she balances motherhood, trail running, and getting diagnosed with cancer during COVID.
Mark Opauszky
Mark Opauszky shares his story of unbelievable resilience in his fight against necrotizing fasciitis.
Steve Veasey
Steve Veasey candidly discusses his life, his epilepsy, and how his journey has brought him back full circle to his first love - illustration.
Michelle de Clair
Michelle juggles many roles with pride: mother, wife, volunteer, her career; yet she maintains a humble, quiet resiliency, as a daily reminder of the dangers of COVID-19.
Joe Tolles
Joe Tolles is a semi-retired, professional hockey player, CrossFit gym owner/operator, organ donor, and inspiration to others.
Brandon Throop
Brandon shares his story, from his diagnosis with non-Hodgkin lymphoma to his aggressive treatment and current remission from the disease. He also talks about his fundraising.
Greg Robertson
Greg Robertson shares about his enthusiasm for triathlon, his ambassadorship for the Somersault race series and his goals for 2023 and beyond.
Jillian Best
Jillian Best shares her inspiring journey from liver transplant recipient to becoming a world record holding swimmer and the first transplant recipient to swim across Lake Ontario.
Bob Knuckey
Bob Knuckey, 75-year-young, endurance athlete extraordinaire became a 2-time, age-group IRONMAN world champion this year in Nice, France.
Mikaela Barnes
Mikaela shares her journey with metastatic adenocarcinoma, her life-changing surgeries, ongoing treatments, and her refusal to let it define what she's capable of.
Needs Improvement Podcast: Daniel Hight
Our founder Daniel Hight joins Nicholas Whitaker on his Needs Improvement podcast to share his thoughts on the impact of physical health on mental wellbeing.
Dr. George Ackerman
Dr. George Ackerman advocates for increased awareness of Parkinson's disease in memory of his late mother who passed from this terrible affliction.
Danielle Patrice
Danielle shares her incredible story of survival against domestic violence and how she now advocates and champions for those who have lost their own voice and agency to this evil.
Nicholas Umali
Nicholas shares his story of persevering through stage 4 cancer and how he views his diagnosis as a blessing that's given him a new perspective on life.
Stephen Glaus
Stephen shares his story of grit and determination of how he battles multiple sclerosis and his journey to becoming a three time IRONMAN.
Ryan Grant Little
Ryan Grant Little shares his story from serial entrepreneur to angel investor and food tech ambassador. He also talks about his ongoing charitable and humanitarian efforts.
Dr. Caesar Lim
Dr. Caesar Lim talks about his podcast The Capable Dads, where he and his co-hosts discuss topics related to fatherhood in an open and honest way.
Carol Schulte
Carol shares how her struggles with mental health led to her founding The Brave Initiative and become the bravest version of herself.
Interview: I Have Cancer, Cancer Doesn’t Have Me
Our founder Daniel Hight is interviewed by Dr. George Ackerman for Together For Sharon on how he navigates life with his cancer diagnosis.
Tabitha Holman
Tabitha shares her experience with metastatic breast cancer and her advocacy to reform the current standards of care for breast cancer in Canada.
Daniel Hight
The inaugural profile is none other than Daniel Hight, founder of More Than Our Story.
Kevin Culliney
Kevin Culliney advocates for cancer awareness and seeking out second opinions and alternatives. He shares his remarkable story of survival, from diagnosis with stage IV cancer.
Barrie Shepley
Legendary coach, commentator, and voice of triathlon Barrie Shepley discusses his love for the sport and how he got started.
Nicholas Whitaker
After his layoff, Nicholas Whitaker co-founded the Changing Work Collective, become a life and career coach and devoted himself to improving workplaces, leaders and work culture.