Ep: 010 - Vulnerability builds vulnerability - Living with leukemia - Felix Chan
Felix Chan - Bio
Felix has spent over a decade in the non-profit sector with a specific focus on mentoring, leadership coaching and spiritual development for university students. He currently leads a team serving students at UBC and SFU with faith-based organization Power to Change.
He is a cancer survivor, having been diagnosed with chronic myeloid leukemia at the age of 27. In remission since 2017, he is grateful to volunteer as a peer mentor with the Leukemia and Lymphoma Society by providing encouragement, care and coping strategies to fellow patients at all stages of their cancer journey.
Felix’s leadership experience and health challenges have shown him the importance of empathy, pursuing faith in community, and the value of being led by a strong “why”. He is passionate about creating space for honest conversations, having seen countless times how leading with vulnerability unlocks vulnerability in others.
Felix is incredibly grateful for his wife Jessica who has been steadfast by his side through all his health challenges. He enjoys playing Lego and Pokemon with their sweet daughters Abby, Ellie and Naomi. Felix’s hobbies include training jiu-jitsu and all things Lord of the Rings.
The Chan Family
Contact Links:
Website - Felix and Jessica with Power to Change
LinkedIn - Felix Chan
Instagram - Felix Chan
Resources:
Summary
In this episode, Felix Chan shares his journey of being diagnosed with chronic myeloid leukemia after a routine eye exam. He discusses the shock of the diagnosis, the challenges of living with the disease, and the importance of vulnerability and community support. Felix emphasizes the power of choice and encourages listeners to be proactive in their own lives. He also highlights the importance of empathy and understanding, as everyone is fighting a battle that others may not know about. Overall, Felix's story is a testament to the resilience and hope that can be found in the face of adversity.
Takeaways
Vulnerability unlocks vulnerability, and sharing our stories can lead to deeper connections and support.
Living with an invisible condition requires being intentional with our choices and not just doing things because we feel we should.
Everyone is fighting a battle that others may not know about, so it's important to approach others with empathy and compassion.
Seeking counselling and support groups can help navigate the challenges of living with an invisible condition.
Sharing our stories and experiences can inspire and provide hope to others who may be going through similar struggles.
Chapters
00:00 Introduction
00:33 Routine Eye Exam Leads to Shocking Diagnosis
02:00 Connection and Gratitude
02:30 Living with Chronic Myeloid Leukemia
07:12 Dealing with Side Effects
09:19 Living with Hope and Dread
10:49 The Power of Vulnerability and Community
18:16 Vulnerability and Hope
19:40 Passing on Hope and Gratitude
26:33 Encouragement for Those Afraid to Be Vulnerable
35:10 The Importance of Sharing and Permission
37:32 Being Intentional with Choices and Showing Compassion
Transcript
Tim Reitsma
Felix, it's so good to see you again, to connect with you again. Our friendship has grown over the years. I've known you for 10 plus years and watched your family grow. And I know we've separated a pass over the last number of years, but it's so good to have you on. And thank you for being open and willing just to share vulnerably about your invisible condition story. So thank you.
Felix Chan
Yeah. Thanks, Tim. Uh, you and Tania are great friends and, uh, really appreciate this project that you've, uh, started to create a voice for this conversation.
Tim Reitsma
So yeah, glad to be here. Yeah. You've got just an amazing story. We're going to jump right into it because I think the people who are listening are, are going to just, um, I think be in awe of your diagnosis story. Um, so I won't jump into it. I'll let you just share a bit about you and a bit about, a bit about your story.
Felix Chan
Yeah, appreciate that. So I guess the journey starts about seven years ago, 2016-ish, we had, just had our daughter, Abby, and there's nothing really wrong with her, her eyes or anything like that, but I thought, oh, why don't I just go take her for a checkup at the optometrist? And I didn't have any problems either. I've always had good vision 20 20, but I thought on a whim, oh yeah, I check my eyes too.
When I was doing the exam, the optometrist was saying, oh, hey, something's kind of off with your eyes. There's some bruising. And I thought nothing of it. But she said, oh, you should go see the specialist. And I just took her card and called them to make an appointment. And a few days later, I went to the ophthalmologist. And she was doing many tests. And she said, kind of like a nonchalant voice, like, Oh, you know, if you should go do some blood tests. And I again, I thought this kind of routine. And I didn't go immediately. I didn't think there was much urgency, but she called me back a few days later, like, oh, like, you should go see a blood test now. And so I just hopped on, made an appointment and it got sent in over the weekend. And
I went down on a Saturday and then on a Sunday she called me and she said, Hey, like I actually don't work on weekends, but I just wanted to let you know that the results came back.
You have the signs of leukemia. And I was just so shocked. I thought like, oh, I went from an optometrist meeting a week ago now to the specialist, now I have leukemia. And it was like a massive, massive shock to myself. And I kind of stood on it the whole Sunday. And the next day my wife and I were going to our staff meeting and...
Jessica noticed something was off and she's like, what's going on, like just pull over. And I just kind of shared what she had shared with me on the phone about my diagnosis. And thankfully, you know, our staff team is amazing. And we drove over there afterwards, like we just spent the time and crying and taking some time to pray for us. So yeah, even in a time of significant upheaval, just having that support was huge.
Two days later, I ended up getting an appointment with my oncologist and she ended up, in my case, a hematologist for leukemia. And found out that it's a leukemia called chronic myeloid leukemia which...
Interestingly enough, 20 years ago, people with this diagnosis, they would have been probably given like a three to four year prognosis. But through amazing research from doctors and researchers that there's a miracle drug called imatinib and that's what I was able to get on right away. And so that was a huge relief to us. Like, wow, like this miracle drug is going to save my life.
And so at least a week after that, I started taking this daily pill, basically chemotherapy in a pill, and we're on a good trajectory. And about two months later, I was going to the movies with Jessica, and I started feeling this really deep pain. And it felt like my sides were just kind of being destroyed, I guess, is the one I describe it in.
Fortunately, the theater was just across from St. Paul's and I told them the pain that was going on got me right through and I was told by the doctor that I had experienced a rare side effect called gastroparesis, which is basically the stomach stopping. And so as I did a bunch of tests, the only factor that they came up with was it's due to this drug that was causing this problem. And that was super shocking and discouraging.
This drug I'm supposed to be taking is really making it possible for my body to function. And that was another roller coaster of what ifs and what's going on. Over the next few months, I was able to get to another drug called dasatinib, which is kind of only used on very rare occasions because the first drug supposed to work for most people, 95% of people. And my hematologist had to get special permission from this board.
And so, thankfully, this, this new drug has been able to help me be in what's called drug induced remission. So it's been about six years since my diagnosis that I've been in. Yeah, that remission and I think I kind of hold intention.
I'm thankful for their mission, for the ongoing healing from that, but I also know it's not a complete cure and it's something I thought I had to live with for the rest of my life and I kind of live in between of is it going to come back? Is it's not done? It's still there. And so it's kind of an odd space to be in, living with hope while also living with a sense of slight dread.
I suppose but yeah, that's a nutshell diagnosis and where I am today.
Tim Reitsma
Thank you for sharing so openly and vulnerably. You know, we've known each other through that journey and I remember you being in pain, needing to go to the hospital. I remember once we're in Vancouver, British Columbia, Canada, hardly snows, we had a snowstorm.
I had a truck at the time driving you to the hospital for your treatment. And, um, and I think there's so much power in community. And when you open, when you're surrounded by people, um, who deeply care and love you, it, it helps, I mean, it doesn't cure anything, but it definitely helps. So for those who are maybe listening today and are suffering silently, there's a community of people that, that love you and are willing to support you. So, so tap into that. I'm curious, Felix, like that tension of living in that, that medically induced remission and knowing that if that medication potentially stops, have you reconciled that in your, in your mind?
Felix Chan
That's a tough question. Maybe before I answer that, yeah, I do wanna thank you personally for that truck ride to the hospital and looking back on the calendar at that time, I was looking at a few of the events and I noticed, seasons on the park meal, courtesy of Tim and Tanya. And I remember that you and Tania just said, God bless you. And like you said, community and that sense of blessing and shared struggle. That was amazing. So thank you for that. That was really, really thoughtful and so appreciated. Yeah, the tension.
I, myself and yourself, we're both people of faith and we know that prayer is a huge part of our lives. And in my diagnosis, I found that impression is a real thing. Just feeling a sense of what's going on, a sense of hopelessness. And sometimes I felt, oh, like in order to have a real faith, I should be feeling this. And sometimes people might have the impression, oh, you know, in order to have a real faith, you got to be happy and joyous all the time and just believe. And so I think that kind of adds that tension too.
Oh, you know, you're healed and you shouldn't have to worry about it again. But I know this could change at any point. And there's a book in the Bible called The Psalms, and the Psalms are basically a series of poems and songs written by a king named David and a bunch of other people. And I found that amazingly helpful to know that the Psalms are written with a whole spectrum of emotions.
Happiness, sure, but doubt, fear, anger, frustration. And I find that as I've weighted the uncertainty of my health, going through the Psalms and praying through those has been refreying, knowing that there's others like yourself, like the psalmist who has walked this journey as well. And I don't need to present this perfect image to other people about like everything is going to be okay all the time because we really we live in a broken world and that's flawed and yeah so I think chatting with folks like yourself reading the Psalms being open has given that permission to hey things are not okay they're not perfect but let's be real with that
Tim Reitsma
Thanks for, thanks again for sharing. Let's be real with that. It's, you know, someone who I feel that I'm in drug-reduced or induced, sorry, remission with Crohn's, um, the last drug that was available on the market for me to try was just approved earlier this year. Uh, without it, I would have lost, uh, my, all my intestine. So I know that this may come back.
It will likely come back. And I think what I'm hearing you saying is we have a choice when we wake up in the morning is we're going to live in that fear or are we going to wake up with a different sense of hope? That sense of that hope that we have from our faith, from Jesus and saying, you know, today might be the day it comes back, but that's not going to stop me from being a good person, partner, a good father, a good employee, a good community member. Yeah. So, but that's, but that also, what you also said about, you know, depression is real and you know, how, how are you doing now?
Felix Chan
Hmm. I've I think emotionally, mentally, a lot better than I have been passed. And I think that's through great support from friends like yourselves, my wife Jessica, my church community. And I know like, we were part of the church community for a long time. And one thing I appreciate about yourself and other members of the group was you didn't see me as Felix cancer patient.
You saw me as Felix, who happens to have cancer. And just that care has been huge. And yeah, I think having community, going to counseling, cannot recommend that. More, it's just amazing to cross with someone who can walk together. And yeah, seeing different mentors who have really helped me walk through all those doubts and struggles has been amazing.
Like I said, walking through this pain and struggle, but seeking God throughout, it's like a concept that I can rely on. And more recently, the past year, I've been part of a support group for leukemia patients. And that's been very therapeutic to myself. And I can avoid it for a long time. I think part of it was survivor's guilt. Like, oh, like, why, why should what do I have to offer? And what about those who might not make it? But I've actually found that being part of that has been healing process for me in addressing that survivor's guilt, but also the feedback I've heard from others is as I share my story, they say, no, thank you for sharing. Like, I'm really diagnosed. Like, it's so, I'm just so freaked out. And I need to know that there's people like you who have walked this path as well. So I definitely am not, you know, like, some rainbows and unicorns person an attitude, but I know that, okay, this journey I'm on is for a reason and I want to pay it back to others and offer that one measure of support of hope that they might otherwise have found.
Tim Reitsma
The word hope is emerging as a theme, as well as the underlying theme of vulnerability. Going to a support group is vulnerable. Telling your friends is vulnerable. Seeking counseling and then telling people on a podcast that you've sought counseling, that is extremely vulnerable.
And I think there's a tie between vulnerability and hope. Would you agree?
Felix Chan
Absolutely. Yeah. I, I'm a big fan of the phrase, um, a vulnerability unlocks vulnerability. And I found that as I've shed some of that fear of judgment or fear of perceived weakness, that others have really leaned in and offered their own struggles and their sense of with depression or their own challenges and that in those spaces we've had a chance to talk about like what is real hope and what we find hope that endures day after day and a great opportunity to share about how faith has been a part of my life and how that has been an immense pillar just like it has been for yours not that it's a cure on end all by no means, but an amazing, amazing resource and, and foundation to, to share about.
So yeah, definitely seen huge correlation there.
Tim Reitsma
Yeah. That, that phrase vulnerability unlocks vulnerability. I've seen that through the half a dozen podcast episodes I've released through invisible condition. I've seen that through social media, through LinkedIn, especially.
It's amazing how it unlocks others. And it, it almost gives that sense of permission, which is really the point of this entire project, whatever I'm trying to build here, whatever I'm trying to do is, is like you said, even before we hit record, this is your normal. And how I live with Crohn's and arthritis and depression. This is my normal.
And so it's, we know that others and other people who are recently diagnosed with cancer or Crohn's or whatever you're diagnosed with. There's a new normal for you and it's going to look different. And people are going to tell you, just eat your leafy greens or eat this, or take these vitamins and everything will be great. That might not work for you. And so connecting with that community of people just to gain an understanding, not just from, Hey, what diet and what exercise I should do, but what gives you hope? What do you hold on to?
And I think that's a nice little maybe a segue into you're a father. You've got three beautiful daughters. And I am really curious, how have you been open with your daughters and transferred some of that hope that you carry into them knowing that, do they know that you are an a cancer survivor or live with cancer?
Felix Chan
Hmm. Yeah. I mean, as you know, fatherhood is a, is amazing gift and that privilege.
I was diagnosed we just had Abby and we've significantly been blessed with Ellie and Naomi in the past few years and I think it's been a privilege really to share that sense of we are in need of hope together and just because I'm the parent, the authority figure, it doesn't mean that I have any less need of God, of pursuing faith, of hope. And I explained to her, I mean just more in general terms that cancer is kind of like these bad cells and this drug helps to fight those bad cancer.
And it's kind of funny, like, she's had these Terry Fox runs to raise awareness for cancer. And one day she came back and she says, you know, I'm thankful for this drug because that way you don't have to get your leg cut off like Terry Fox. And it's just like, I just love the childlike appreciation for wow, yeah, it's amazing that I don't get my leg cut off.
And we recently had a leukemia fundraiser. And it was a joy to see so many families, so many patients, others who have walked the same road and be able to share with Abby and Ellie, Naomi. We're here because many people have sacrificed their time, their money, so that others could have life or a better chance at it. And so,
Yeah, I think it's passing on hope but also passing on gratitude that we're not in this alone. We're here because others have labored, have worked so hard to care for other people that they might not even physically see. And so I think I've just tried to cultivate that practice of, now we have hope. We can also be gracious and grateful for every day
Tim Reitsma
Yeah, you know, in inviting our children to participate in raising awareness. I am, I'm a crazy advocate for that. You know, when I, three years ago, when my Crohn's came out of remission, it was in a drug, drug induced remission. My body rejected the medication after 15 years. My wife really took charge with my son, with Willem and he was always a crafter, loves to create stuff and was creating these pendants and in, in my really spearheaded by my wife of, Hey, we're going to raise awareness and raise money for the Crohn's foundation. And we explained to Willem and my, and my daughter at the time, what was going on. And, and she said, what do you want to call this little business?
And his little brain was was, uh, you know, acting like a little, little brain and said, pooh pendants. And he just laughed. He thought it was the funniest thing, you know, Crohn's and, you know, washing stuff and, um, but it, it is stuck and he's raised hundreds and hundreds of dollars on his own for the Crohn's foundation. And the point is, is if we. Hide who we are, what our version of normal is from our kids, especially from our families.
Um, how do they truly know us? And so inviting them in, inviting them in along and to create, to create the story. Uh, that's amazing. I love how your, your little daughter's brain works. And it was like, I can imagine running this fundraiser or running the Terry Fox run and thinking in her mind. It's like, I'm so glad my dad has his legs.
Felix Chan
Yeah. I love kids. Yeah. It's, um, you know,
Tim Reitsma
There's your, you've stepped into vulnerability. You've stepped into hope. I know there's people that are going to listen to this or see this on social media that, that are really afraid to be vulnerable, but yet have maybe this. Desire inside of them to share. And maybe it's a deeper desire to connect. What encouragement do you, do you want to leave for someone who wants to and has that desire, but is afraid.
Felix Chan
Yeah, it's a great thought. I think the first thing would be. I think recognizing that we're all fighting a battle that no one knows about. Um, so time and time again that we can, I can have assumptions. Oh, this person seems to be radiant and joyous. I don't know if I want to share with this person because I don't want them to be down or whatever it is. And I've actually found that as I've shared with people, hey, actually I'm not, I'm not doing so well. Like maybe the side effects, my medication are kind of getting me down or whatever it is that more often than not others, they want to show care. They want to show curiosity. And it's been an open space to build a deeper relationship there. Now, that said, there have been times where I've opened up and the response has not been what I wanted. I shared about all my side effects from medication and whatnot. And someone says, oh, yeah, you know, I had a bad cold last week, you know, and so it's no off-putting. But I'd say, okay, that's tough, that's tough. And I kind of move on. But I'd want to encourage as we share our stories, what we're going through, most people will lend you their ear, lend you their vulnerability as well. And it's an open door, an opportunity for amazing relationship and connection.
And perhaps even before you share openly, I'd recommend, you know, writing some of your thoughts down. Use a feelings wheel. Try to identify, are you feeling hurt or depressed or discouraged? To give you those words to share, hey, I'm feeling discouraged today. I could use a hand with X.
So that we're not just kind of laying everything down unfiltered without clarity. And again, I would want to bring up counseling again. Counseling is an amazing way to have someone listen to share perspective insights.
And like our counsellor said to us, he said, think of me as a paid friend. And I love that because I could just share openly and I didn't have to worry about judgment or anything. They were there to listen. And so, yeah, I'll just recap. Kind of get an awareness of your feelings and journal or whatever it is, pursue counselling or a friend that you know you can open up to and then take that risk of being vulnerable with others.
Tim Reitsma
Yeah. Awareness of feelings. Uh, that was great. What you said. I'm just looking at my notes. I'm feeling X. I need help with Y. That is so powerful when it's distilled down other distilled down into something that is, um, it is brief - brevity and clarity. It's brief and clear.
And you might need 10 things, but if you have one person reaching out to you, it says, how can I support?
Be clear, right? That person might not have capacity for 10 things, but what is the one thing that you need? I am feeling discouraged. I just want to go grab a coffee with someone. Are you free? Or I am feeling in pain and not able to leave the house. I need support watching my kids for an hour. Just be crystal clear. And you will run into people who will say, no, I don't have time for that. And that's fine. Don't but know that one rejection does not mean everybody will reject it. Reject you. I want to be clear on that. One rejection does not mean everyone will reject your, uh, your request and be bold in that. Um, uh, that's, it's an amazing share. Um, awareness of feelings, pursue counsel or a friend, get it outside of your body. Talk to someone. Um, and yeah. And then.
Take that step of vulnerability, practice sharing your story, write it down, write down your story. And, and if you want to share it, there's people who want to listen and not listen out of just that self-serving place, but out of authentic curiosity, that place of, tell me more, how can I support?
Felix Chan
Yeah, totally. And I think something that really, I want to be clear.
What I'm sharing now is after many years of wrestling and struggling. I, uh, I know that one of the biggest challenges early on that Jessica shared with me was.
I don't know what's going on in your head. I'm trying to guess, but I don't know how you're feeling. I don't know how it can help. And in those early stages of diagnosis and uncertainty.
I felt this internal pressure like, oh, I gotta keep strong for my family. I can't show any kind of weakness. And my foolish perspective was, I'm gonna be a strong, silent figure and that will help them be inspired by my example. And that way I won't worry them. But ironically, it was because of my silence that Jessica worried. I don't know what he's feeling. Is he feeling depressed or angry or frustrated or suicidal, whatever it is. And we're doing a counseling session that I finally shared that and she said, no, I need to hear from you. I feel safe actually when you share that you're down that you're in need of help. That way I know how to support you. And that was such a revelation to me. I was living on the stereotype definition of manly strength or perseverance when what my, what my bride needed from me was that vulnerability. And I thank her for pushing me towards sharing that because that's part of the deeper intimacy that we've never have had before that.
Yeah, it's great that you acknowledged that it's taking, it's taken a long time. It's taken some counseling to open up and be vulnerable. And, um, there are no people who are just an open book. They're right from the get-go. Hi, my name is so-and-so. This is what I have. And I've also met a lot of people who are timid and nervous and don't want to share and just want to have that like, oh, I've got it all together. And. And I just want to break that down. Right. Create. If we want to end the stigma that surrounds us, we need to step into our story and, and. Feel comfortable with our story and maybe, maybe comfortable enough to share it, but be comfortable in that story. That's one way we're going to end this stigma that surrounds this. And so hearing how Jessica had said, no, I need to hear that. You know, I know Jessica, I could just imagine how she was like, you know, the emotion that she's wearing on her face and the emotion she's carrying when she said that. How did you feel? Was it a sigh of relief or was it, oh no, I still need to bury this?
Felix Chan
I think it was, there's still some part of me that held on to, I got to bury, got to repress this, but for the most part it was relieving. I know I wanted to share. I needed that external permission that I wasn't giving myself. And I must be a theme amongst the other episodes you've recorded.
I echo that as well. Sometimes it's hard for us to give ourselves permission, and we need others to give us that space and that openness to share.
Tim Reitsma
Yeah. Giving yourself permission. It's so hard. You know, it's something that we share. Yeah. It's like, even though I'm in this project, I still struggle to share. And there's things I haven't shared and maybe one day I will share, but it's, you know, it's your story. And the beauty of your story is you get to choose what you want to share and how much you share and maybe over years and years, you'll share more and more and more, but it's your story.
And I'm just grateful for you, Felix. I'm grateful that you are here today sharing vulnerably because it will unlock more vulnerability. And I'm thankful that you are, you're living your best normal and whatever that looks like. And I'm just grateful that God has put you in my life and in a way that we can build each other up and support each other from a distance over these years. And, uh, so, you know, maybe my last, last thought here, your last thought is, you know, as we look to wrap up, what is one or two things that you want to leave for our listeners? What's some encouragement that you'd like to leave for people?
Felix Chan
Yeah, I think the one major thing I'd say is. I know wherever you're at, wherever we're at in your journey of health, wherever you don't need to wait for a catastrophic life illness like Crohn's or leukemia to be really intentional with our lives. One thing I've learned, and I'm sure you've learned over your time with your illnesses, how often we're living under the weight of expectations of others or stereotypes or self-imposed, I should do this because of blank. And I think I've been reminded time and time again that-
Pursuing things just because we should pursue it might not be the best way to look at things and I Realized how important? Just saying oh No, I'm gonna pass on that Because I want to pursue Why instead? Knowing whether it's career path or its vocation or social engagement, that we do have that power of choice. And sometimes we give that up to please or get the approval of other people and live with a performance mindset. So that's first thing is just be proactive with our own choices.
And secondly, I'd say. I want to reiterate - remember that everyone is fighting a battle you know nothing about. And perhaps that's ourself, we're wrestling with something and we need help. But we think of friends and family, the ones we see on the street. How can we think just more compassionately, more graciously to that person? Because we don't know. They might have just been diagnosed with cancer off and optometrist appointments. They might have lost a loved one, wherever it is. And so maybe someone's like really frustrated or angry or they seem like they're off. I know I've been challenged to think and express empathy. Even inside, even if I don't say something, choosing to think well of the other person, whatever they're going through.
Tim Reitsma
It's two important things to end our recording on the power of choice. And everyone is fighting something and, and it could be something small. It could be something life-changing. Again, Felix, I really appreciate you coming on and sharing. And I know this episode is going to tug at people's heartstrings. And so if you are listening and you have questions or you'd like to connect or you're curious about telling your story reach out to me at invisiblecondition.com. Also in the show notes, there's a couple links to how to get a hold of Felix. If you want to connect with him and hear about his story a little bit more head to, again, head to the website or wherever you get your podcasts and selfishly.
I just love for you to follow on Instagram, on Facebook, on LinkedIn. Um, I just want to keep spreading this message out, um, not, not from a selfish perspective, but from a place of, I know that this will, um, change people's lives by this power of sharing about our invisible condition. So with that, thanks again, Felix. And thanks everyone for tuning in.
Felix Chan
Thanks, Tim.
