Self Care and Resilience (ft. Tom Hulsey)

Thanks for tuning to Digital Voices Podcast, where we chat digital transformation challenges and opportunities across healthcare and life sciences. And now, your host, Ed Marx.

All right, excited to have another special guest with us in this week's pod, and it's my friend, Tom Halsey. And we have so many connections, most of them good connections, but there's one or two that's not quite as good, but we'll get into that. We're going to really talk about digital health again from a patient point of view, but it's much more than that, and you'll catch a glimpse of that. And so, Cindy, it just reminds me about the importance, because I think you'll hear a little bit about this from Tom and I, about preventive maintenance with your health. So I know you're a really young and healthy person, How were you raised? Like, did you have annual physicals? Do you always like make sure that you get all those things done?

It's funny you asked that, Ed, because I was actually just having a conversation with a friend of mine where she was telling me I need to schedule an appointment to get a physical and some blood work done because I couldn't remember the last time I had done that. And I finally did, thankfully. But I was definitely raised that going to the doctor was mainly just for when you were feeling poorly and not just a recurring thing. But definitely trying to get into the habit of changing that mindset.

Yeah, that's good.

I'm glad for your friend who's gently nudging you that direction because it's really important. You'll hear a little bit maybe about why that is. And so, you know, as I think many people know, I'm writing a book with Chris Ross from the Mayo Clinic, and it's on consumer experience or patient member experience in healthcare. And really one of the bottom lines, and I think you'll hear that from Tom, echoed from Tom a little bit, is that you have to take control of your experience. If you rely on someone else, if you rely on the system, Or someone else, it could fail you.

So you really need to take control of your experience in healthcare. So anyways, look, Tom is a men's health champion. He's an author, he's an athlete. That's some of the things we have in common.

We both have written books, uh, we both have done Ironman, although Tom, let's—

many, many more than I, than I have. Uh, expertise in, in cybersecurity. So we have great things in common, but some things not so good in common. And I'll let Tom talk about that as I allow him to introduce himself. But Tom, before you get to do your formal sort of introduction, we always ask 2 questions of all of our guests. The first one is, what's your favorite music?

So maybe when you're running or biking, like if you listen to tunes, what's on your playlist?

Well, my favorite group of all time are the Beatles, and my favorite Beatles song is Long and Winding Road, which kind of defines, you know, my life journey, if you will. But I love the Beatles. I love other '60s and '70s pop music, if you will, and also some country in there too.

Yeah, no, that's great. Now, the Beatles, that— I don't know, I've never met anyone that didn't like the Beatles.

You know, they were so informative to many of us, and depending on your age group, If not directly informative to us, it was informative to the groups and music that they listen to today.

So that's cool. What about your life message?

Did you have a personal passion, a life message, a mantra, some, some words that you live by?

Well, I really embraced, uh, the words of Jackie Robinson, the first African American to play Major League Baseball, and he said that a life is not important except the impact it has in other lives. And I really have embraced that with some of these health challenges and the perspective I now have on life. But my purpose really is to inspire people to take action and be proactive with their health, and by sharing, by sharing my lived experiences.

Yeah, and you do that really, really well.

I'm a big follower of yours on all sorts of social media and You have really done so much for men's health and truly a champion. So, I am so honored that you are here with us.

So, tell us your story.

You can start way back or wherever you want and bring us up to date.

Well, it took me a long time in my life to really, I guess, to find my purpose or why, and it took really some health challenges that really changed my outlook and my purpose. I will start with really my You know, I was rocking along in my career. As you said earlier, I was a cybersecurity consultant, and my entire career had been in technology, but I was in— I thought I was in great health. I was, you know, people always viewed me as being Mr. Fit and healthy, and then I was hit. I was blindsided, if you will, on my birthday in 2015.

Wow.

When my urologist told me that that I had prostate cancer, and that really rocked my world. And and I I had all the emotions that typically you have when you you get a diagnosis like that. You know, I was overwhelmed. You know, I was angry. I almost felt like I was a fraud because people had always viewed me as being very fit and all. I was embarrassed, ashamed, all all the all the adjectives you can think of, and compound. Surrounding my angst was the fact that I had just witnessed my best friend lose his life to prostate cancer. He battled it for 4 years and it was absolutely gut-wrenching and at that point, I literally, you know, I really withdrew. I kept everything bottled up inside of me and of course there is a lot of lessons learned from that in hindsight, but I kept everything bottled up inside of me and I was like, a typical man. I didn't want to talk about it and primarily because of the personal nature of prostate cancer, but I was diagnosed on my birthday and then it took me over a year before I finally started to tell people about what I was going through and it was through the encouragement of my wife who suggested, why don't you write a blog and if you impact one person in this world, just saying how that would make you feel. And the first response I got back was from a gentleman in New Zealand. I had given him hope and inspiration with my blog, and then it just kind of mushroomed from there. And all of a sudden, this was something almost bigger than me. But for me, though, it was just so therapeutic to write about it because I kept everything bottled up inside. But through the encouragement of a friend, though, I am— he said, he reminded me that I'm— that, you know, you've done the Ironman, and the Ironman motto is anything is possible. Tom, you need to remember that, and you need to set goals for yourself to get beyond these dark days you're in right now. And that's really when I shifted my mindset, and I decided to— again, I— What can I do to help make the world a better place? At the same time, I discovered ZERO: The End of Prostate Cancer. That is a charity that I am part of. I fundraised for ZERO and I raced at Ironman Lake Placid. Ironman Lake Placid and walking my daughter down the aisle were my long-term goals in 2016 and I achieved both those. From there, it kept going. I was invited to go to the Ironman World Championship in Kona, Hawaii. Again, it was just so rewarding. I got to speak there and share my story. From there, I started becoming more engaged in other areas, including advocacy, which I can talk about in a minute. But 7 months after I crossed the finish line in Kona, Hawaii, I was diagnosed with severe coronary artery disease. And again, that was a shock in itself and another one of my lessons learned about listening to your body, because my first cardiologist that I went to was looking at me and he totally dismissed me. He just thought I was having an issue with my shoulder or whatever from some shoulder surgery I had, but totally dismissed me. Me, and I knew something was wrong. And so I ended up changing cardiologists, and I was diagnosed with this severe coronary artery— I can't say it— coronary artery disease, and ended up having a couple of stents put in, in my heart. And actually, even though I was eating well, I really Dialed in on my diet after that because, as the doctor said, I was doing everything right in my life. You know, I'm active, I ate right and everything, but the one thing you can't control though is who your parents are, and so it had a lot to do with genetics. Fast forward another 11 months though, I started having the same experience again though. I was experiencing something going on. Uh-huh. In my chest when I was exerting myself, and I went into the hospital, and they ended up putting 3 more stents in my heart, and while I was on the table, I had a heart attack. So, again, another, you know, another curveball of life was thrown at me, and so there I was, but anyway, And then coming forward now to this year, I was diagnosed with severe carotid artery stenosis, and I had to have a carotid endarterectomy back in March of this year. So basically, I've had 3 life-challenging events, and again, it's really given me a wonderful perspective on life, and each day is a blessing, if you will. And today I am, you know, doing advocacy and I am mentoring men that are newly diagnosed with prostate cancer and several other things including the book you mentioned earlier.

Yeah, that is— you have taken a lot, but you have been very, very resilient and a model for many others, so— and I can appreciate it, I can relate to a lot of what you have So, you know, you have had a lot of interactions recently in the last few years with healthcare.

Can you take— tell us a little bit about your patient experience?

And, you know, our audience is largely like chief digital officers and people around patient experience and some technology people. You know, I think they would be listening for, is there anything that we could do from a technology point of view, from a digital or experience point of view to make your journey even better? Obviously, you had good outcomes. But, you know, anything that you could share with us might help us, you know, for future patients.

One thing I— well, one thing that I think is new out there that's really making a difference is precision diagnostics and treatment. And there's really a paradigm shift today in the way cancers are treated, you know. They're based on the tumor genetics rather than on the site of the origin in the body. And this new site-agnostic oncology therapy just isn't specific, again, to a cancer in a specific part of the body, such as breast or colon cancer. And tumor genetics, not the site of the origin, is the future. And this is really leaps and bounds when you think about it in scientific discovery happening in our lifetime. And it really is quite astounding to think that we just began sequencing the human genome around 2003. And now that we can do— now that we can get— do this level of sequencing for a tumor for a fraction of the cost and the time, I'm hoping this will lead to eradication of all cancers in our lifetime.

Yeah, it is remarkable some of the advancements that have been done. So let's talk a little bit about your, your book. So tell us about your book and what you, you know, what your purpose was in writing it and what encouragement do you have for, you know, for both male and female listeners?

The book, I've actually written 2 books, and the first book was— how do I say this? I was a newbie when it came to writing books. You know, writing blogs is one thing, but when you write a book, that takes it to a whole, a whole nother level.

Absolutely.

And, but I was encouraged by a lot of people said, you ought to share your story, you know, put it in a book because it's so inspiring and you're giving people hope. And so I, so I authored, authored my first book in 2018. And, and all, all the net proceeds are going back to cancer research. But, but the book is about, about mindset, really, and it's built around my cancer journey. But, but mindset is so key when you— when it comes to anything in life. And I really did embrace what I call winning mindset. Some people may call it a growth mindset, but I really embraced that winning mindset when I had that mindset shift back in 2015. And I talk about the components of my winning mindset in that book and how it can be applied to your everyday life when you're facing challenges. And I also, too, I compare it to the Ironman. And for those in the audience that aren't familiar with the Ironman, the Ironman is a 2.4-mile swim followed by a 112-mile bike followed by a 26.2 marathon all in one day. And Ironman really is a metaphor for life because it— that's a long day, what I just described.

Mm-hmm.

And there are a lot of ups and downs in that long day. And just like in life, there's ups and downs, and how you deal with adversity really is what defines you. And so I draw a lot of parallels there in my book. And my second book, which I just recently released, really builds on the first book, but it also includes my journey with my cardiovascular issues. And I had input from some of the top oncologists and cardiologists in the country with my book. The foreword was written by Dr. Ken Cooper, who is the father of aerobics. I'm just so honored that he wrote the foreword for it. I mean, we're all active today because of Dr. Cooper. And in fact, my father got into the jogging boom back in the '60s, when he wrote his first book, Aerobics, and it hit the dictionary. The dictionary definition of aerobics is written by Dr. Cooper. But I'm hoping my book though, bottom line, Ed, is I hope that my book will inspire and give hope to people that are dealing with challenges in their life, and not, not just men, but women too. And, and best of all though, the net proceeds are going back to medical research.

Yeah, so you can find—

we can find your books, Tom, on Amazon.

Yes, sir.

That's a good place. And Hulsey is H-U-L-S-E-Y, so Tom Hulsey, which you'll see also on the COVID of our podcast in case you forget. And I would really encourage you to go out and purchase those books, not only to learn, but also it is for a great cause.

And you're right, you, you're—

you talk in the book about the same thing that, uh, Chris and I have discovered when we're writing our book In terms of what really makes a huge difference is not only becoming your own self-advocate, but also being resilient. You know, the resiliency that you're describing is really key in that winning mindset. So it's your ability to take on challenges that come that are unforeseen and to work through them like in the Ironman. So you've done 11, I think, right?

11 Ironman races?

Yes.

Yeah.

So that— so I pale in comparison to how many you have done.

But I know that during the Ironman stuff happens All the time.

And it's your ability to be resilient to get through it.

Absolutely.

Flat tire or what have you. And you just, you get to the finish line if you keep at it. So no, that's really good. What are, can you perhaps come up with any thoughts around what we could do to make the experience better as a patient? We talked earlier about how precision diagnosis is really making a huge difference. Is there anything in your experience as a patient that we could apply other technologies to, to make it more seamless?

Well, in my— I had 2 very different experiences, if you will, from my— with my prostate cancer surgery and my heart or cardiovascular issues. And I think a lot of it had to do with the hospital and all because— and this is— I'm not sure this is a technology answer or not, Ed, but when I went in for my cancer surgery, the nurse that greeted me asked me how I was doing. And I said, well, you know, I'm kind of nervous, you know, what I was getting ready to go into. And I just politely asked her how she was doing, and she responded back, well, I'm doing a lot better than you are.

Hmm.

And so there— the empathy just wasn't there on the team that, that was taking care of me that day in the hospital. I mean, to start off with a statement like that, of course, I think my blood pressure went through the roof when she, when she told me that. I was already on edge, if you will. But now on the cardiovascular side of things, though, it was the complete opposite. The empathy for the human being that's sitting there or laying there in the bed, it was just totally, totally different. But I think to answer your question, though, maybe teaching some of the doctors and the staff, you know, have empathy for that person. That's a person you're dealing with, and it's not just a number, if you will.

Yeah, that's a really good point.

Not everything has a tech answer.

I definitely embrace that for sure. It does come down oftentimes to people, and it's hard. You could have the best technology, the best systems, you know, that enable a great experience experience and the clinicians and all that. But if you have a few people who don't understand empathy, don't understand the importance of the experience for both the patient and family and caregivers, other caregivers, it can ruin the whole thing. So that's, that's another reason why. And we're not here to pitch Tom's book, but I get asked that question all the time. Tom, how do you teach empathy? You know, I always say it's hard to teach. It's really caught. more than taught. But one way that you can learn a little bit about it from an academic point of view is read other people's stories or watch documentaries. But certainly reading other people's stories and understanding sort of how they feel. So if you— and hopefully, you know, no one has to go through such extreme experiences as you and I have gone through. But, but if you haven't, to understand someone else's story, to walk in it, sometimes a book is helpful, sometimes a movie is helpful. But, or ask people questions, others that, that, you know, ask them about their journey. And that, that sometimes helps to build that sort of empathy. And yeah, I could go on and on about that, but we'll cover that at some other time. So what is your admonition, I guess, Tom, to others about their health, like being a men's health champion, but health champion in general for For others in the audience, you know, what are one or two things that you would like to leave with individuals who are listening today that maybe are a little bit casual, like they're unbeatable, like they're like you and I were when we were both super fit, eating healthy, exercising, doing Ironman, and bam. So what would you say to those people that think, you know, aren't thinking too much about their own health today?

Well, first of all, when I talk to younger people, and when I define younger people, I'm talking about in their 20s and 30s. I say you've got, you know, you've got, you've got it. What you do to, what you do to your body in your 20s and 30s, whether it's good or bad, is going to impact you the rest of your life. And, and in my case, you know, I was taking care of my body. So I was— that's what really, I think, helped me get through the challenges I've had because I did take care of my body when I was in my 20s and 30s. But really, takeaways, I guess, if you will, are you have got to listen to your body and to be proactive with your own health, and early detection with so many diseases is key, and I refer to both cardiovascular disease and cancer, specifically prostate cancer, as silent killers because both those— both of these diseases typically do not present side effects, if you will, until it's really, you know, progressed to a later stage. And so you— and that's why, again, why I call them the silent killers. And of course, when you're further down the line as far as the progression of this disease, that limits your options and reduces your chances of of a quality— well, of actually living and/or at the very least having a quality of life. So, you know, really listen to your body and be proactive. And as, you know, again, my— I thought the example I gave a few minutes ago about my first cardiologist, you know, I didn't take no for an answer, but I— because you— again, I knew something was wrong. And get checked on a regular basis. You know, unfortunately, the numbers for prostate cancer and cardiovascular disease are not trending in the right direction right now. And for example, 3 years ago, a man died every 18 minutes from prostate cancer. Today, it's down to 15— a man dies every 15 minutes. And there's a lot of issues going on there, and one of the issues that we're addressing Zero, and COVID really made this, really amplified this, is eliminating racial disparities in healthcare.

Yeah. Yeah. I want to double down on one thing you said. You know, you just gave 3 or 4 things that everyone should do, which is really good. And one thing I want to double down on because I think sometimes people don't push hard enough, and that is, your cardiologist, your first one, said, oh, don't worry about it, it's related to your shoulder. But you said no, you kept pushing.

And, you know, I didn't.

I was sort of complacent because it was the words I wanted to hear from my doctor. Hey, oh, you know, don't worry about it. You know, your PSA score is going up, but, you know, nothing to be concerned about.

And I wanted to hear that. I like that answer.

So I went with it for a couple years. You know, and finally my wife, she's like, hell no, this is no. So she got, she got in cahoots with another doctor and the two of them sort of forced me to go seek this alternative care. And sure enough, you know, I was at level 7 already. So it's really important to, to take control, not always take the first answer you get as gospel.

So, wow, we covered a lot of ground here.

Yeah, go ahead.

I was just gonna say, if, if I had listened to that first cardiologist, I would not be sitting here right now. I would have had a heart attack sitting on the couch watching TV or eating dinner or whatever. So I'm so thankful that I really did— I was proactive and kept pushing.

Yeah.

No, we're glad you did. Tom, we covered a lot of area, a lot of ground. It's been fun. We could talk for another couple hours.

Just on Ironman, which is what I'd love to do someday.

But, you know, is there, is there an area that we missed, or perhaps an area you want to double down on?

You have the final word.

Well, I think, I actually think in my last answer, I maybe gave you too long an answer there. And I think I pretty much encompassed it there as far as, you know, being, you know, again, just being, you got to be proactive with your health and Getting checked on an annual basis. I have talked to so many men, you know, they do not understand what prostate— what the prostate is and what prostate cancer is and so as an example, I talk about getting checked and early detection. The widow of my great friend who lost his life just prior to my own diagnosis will tell you he skipped a year in getting his PSA checked, and that's what ultimately killed him. And I'm mentoring some men now that had skipped last year because of COVID Of course, this goes with a lot— in a lot of basic healthcare, but they skipped getting their PSA checked, and now they're in a pretty tough place right now. So— Yeah.

Yeah. And especially for men, you know, the PSA test, it's just part of your blood test panel at your annual physical. It's like no big deal. So there's no reason to ever skip it. And I've heard so many stories like that. People skip a year, oh, it's just one year, no big deal. And that happens to be the year. So we just, both Tom and I just encourage our listeners. I know this is Digital Voices and all things about experience and human-centered design and great things that we can do with technology to enable, you know, these sort of experiences. But at the end of the day, it's up to each of us and we have to own our health and we have to be proactive. So we just encourage you as both survivors, cancer survivors, heart failure types survivors to go get checked, eat right, live well, exercise.

Thanks everyone. We'll chat again next week. Thank you, Ed.

Hi, this is John Lynn from the Healthcare IT Today podcast. If you like the latest rumors, insights, and happenings in healthcare IT, you'll enjoy hearing my colleague Colin Hung and myself debate and share the latest happenings from the world of healthcare IT. Find the latest episodes or dig into our archive at healthcareittoday.com, or search for Healthcare IT Today on your favorite podcast application or YouTube. When it comes to healthcare technology, we love this stuff. And we can't wait to have you join in on the discussion of everything health IT.

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