Cyclist for Life Howie: Riding the Ups & Downs of Cancer
SHOW NOTES
Expert Guests:
Kathryn Schmitz, PhD, MPH:
UPMC Hillman Cancer Center, Moving Through Cancer
Formerly: Penn State Cancer Institute
Leading researcher in exercise oncology
Notable Publications:
Articles of Interest:
Resources:
Howie, a recently retired software engineer, has been an avid cyclist most of his adult life, with a total mileage equivalent to a few laps around the planet. But more remarkable is the fact that Howie has done a good bit of that cycling with cancer – not one, but six cases of lymphoma, or cancer of the lymph nodes.
Consider one of Howie’s favorite charity rides, The Pan Mass Challenge, which benefits cancer research through the Jimmy Fund. It’s a two-day, 200 mile ride across Massachusetts that Howie has done 24 times. “I’ve ridden it with pneumonia,” he tells us. “I’ve ridden it with cancer.”
Howie credits his oncologists and cancer therapy for surviving this decades-long odyssey, but he’s quick to add that cycling has contributed as well. “Because of all the riding I do,” he says, “they’re able to hit me harder with chemo, with radiation when they have to.”
Our expert guest on this episode, the noted exercise oncologist Dr. Katie Schmitz of the University of Pittsburgh, concurs via this comparison.
“If you think about a little old lady, 85 years old, weighs 90 pounds soaking wet,” says Dr. Schmitz, who was a professional dancer before becoming a research scientist. “And then you think about somebody who is a regular cyclist – you are able to hit the one who has more muscle harder, which is treating the tumor better.”
Need to change gears on your commitment to exercise? Tune in for some inspiration from the intrepid and indefatigable Howie, Cyclist for Life.
My Body Odyssey is a Fluent Knowledge production.
Original music by Ryan Adair Rooney.
What's your body odyssey? Let us know.
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Howie
In 2007 I rode cross country and there we were passing the Bookshelf Plateau. And basically it took us all day to pass this rock!
Rob Pease (co-host)
Howie is a recently retired software engineer from Central Massachusetts.
Howie
You're riding beside it and riding beside it and riding beside it.
Valerie Wencis (co-host)
Howie has cycled across America. He’s done the Pan-Mass Challenge – a two hundred mile bike ride – 24 times. And now retired, he regularly rides over 50 miles a day.
Rob Pease (co-host)
Add all that up – Howie has spent a significant portion of his life on a bike.
Howie
You know, you see lots of different things. We see deer. There's suicide squirrels. And you know, they always come running out right in front of you. But while you're out there, you get to see the world at a slower pace.
Valerie Wencis (co-host)
Howie has a great love of cycling but quite possibly owes his life to cycling, when you consider the recurrent health challenges he has cycled through.
Howie
Over the last 25 years I have had six rounds of a non-Hodgkin's lymphoma. Because of all the riding I do, they can hit me harder with chemo with radiation when they have to do it.
Rob Pease (co-host)
This is My Body Odyssey, a show about the rewards and challenges of an active lifestyle. I’m Robert Pease.
Valerie Wencis (co-host)
And I’m Valerie Wencis. In this episode, we’re going to ride along with Howie on his decades-long fight against cancer – in Howie’s case, recurrent lymphoma, or cancer of the lymph nodes.
Rob Pease (co-host)
Unfortunately, almost everyone knows someone affected by cancer. It’s the second leading cause of death in the US, after heart disease. The American Cancer Society estimates that currently almost 2 million new cancer diagnoses are made each year.
Valerie Wencis (co-host)
Cancer treatments – chemo and radiation – are notoriously rough on the body. Patients often find themselves asking which is worse: the disease or the treatment.
Rob Pease (co-host)
Loss of appetite, nausea, weakness, fatigue. It can really start to diminish your ability to do the things you love. Especially if those things involve being active.
Valerie Wencis (co-host)
Yet being active is one of main recommendations made for cancer recovery. But Howie didn’t need to be told that. He was determined to not let cancer come between him and his bike.
Howie
I've ridden Pan Mass Challenge. I've ridden it with pneumonia. I've ridden it with cancer.
Valerie Wencis (co-host)
So what was your relationship like with exercise early in your life?
Howie
I mean, as a kid, the bike was the means of transportation. I went to WPI, lived off campus, and when I didn't have access to a car, the bike was the way I got to campus.
Rob Pease (co-host)
Howie’s always been an avid cyclist. But it was in his 30s that he started to love cycling for exercise, for camaraderie, for the scenery, not just for getting around. Unfortunately, this was also when Howie first discovers a mysterious lump.
Howie
Probably around the same time that I started getting into mountain biking, I thought I had a hernia. One of my buddies said, go get it checked out before we go down to Hatteras to go windsurfing.
Valerie Wencis (co-host)
So Howie goes to the doctor. The doctor examines him and says, it’s not a hernia.
Howie
You probably smashed the lymph node. It’s inflamed. We're gonna cut it out. So, I got called into the doctor's office and he said, I have some bad news. You have cancer. But the good news is we've already removed it. I actually went to work the next day.
Rob Pease (co-host)
An oncologist prescribes Howie a low dose chemotherapy. And afterwards, for a few years, Howie’s cancer free.
Valerie Wencis (co-host)
But then…Howie finds another lump under his arm. It’s a recurrence of the same cancer as before: small cell lymphoma. So this time, they use radiation.
Howie
And again, I was cured. And a few years later, I ended up with a lump in my arm again. They radiated it and I was cured.
Valerie Wencis (co-host)
It goes on like this for years. Howie comes in with a new lump, doctors treat it, and Howie’s cancer responds. Howie then goes through a period of remission, but only until the next lump.
Rob Pease (co-host)
Such a grueling up and down odyssey. We wanted to know how common a pattern this is, so we reached out to one of the world's top authorities on cancer and exercise, or, in the most basic terms, cancer and movement, Dr. Katie Schmitz.
Dr. Kathryn Schmitz
So, the answer to your question is that I'm actually on my third career. My first career was as a professional classical dancer in New York City. And it was as a fitness trainer that I decided I wanted to get a master's in exercise physiology, and I came across a single paper that changed the direction of my career.
And it was a call to action, and it was basically saying, Hey, you there with training and exercise in cardiovascular disease and metabolic disease? We need you over here in exercise and cancer.
Valerie Wencis (co-host)
Just so people are aware, can you just define exercise oncology for the layperson?
Dr. Kathryn Schmitz
The idea is that we are interested in the field of exercise oncology all the way from primary prevention of cancer to begin with, to potentially even intervening with people who are receiving palliative care and are towards the end of their life. And everything in between.
Rob Pease (co-host)
We introduced Dr. Schmitz to Howie’s case and asked how unusual it was that his lymphoma returned again and again.
Dr. Kathryn Schmitz
Yeah, so I have so many things I wanna say about this situation. One is that it is actually incredibly common. Lymphoma is one of those things that comes back and comes back and comes back and comes back and comes back. And the good news is that some forms of lymphoma reoccur the way that Howie’s experienced it, and that is that they are incredibly treatable.
Valerie Wencis (co-host)
But the sixth time Howie’s lymphoma returned, it wasn’t so simple. And not as easily treated.
Howie
I started having problems swallowing, and they said, ‘There's a small mass, but we're not seeing anything. We don't know what's causing it.’
Rob Pease (co-host)
The mass was positioned right at the bottom of Howie’s esophagus, blocking the way to his stomach.
Howie
I was basically days away from needing a feeding tube because the size of the mass at the top of my stomach was basically blocking food going in into my stomach.
Valerie Wencis (co-host)
Solid foods were too hard to get down. Howie says the only thing he could do was drink smoothies and shakes, like Ensure.
Rob Pease (co-host)
He started to lose weight, but even so, he was still hell bent on riding his cycling club’s century that year. A century is a hundred mile bike ride put on by many clubs throughout the country. Something of a cycling ritual. Howie didn’t want to miss it, even though it would be extremely grueling and require a lot of planning.
Howie
I was living off of Ensure that year during our club century. I actually sent ahead to the rest stops Ensure so I had something I knew I could eat, but it didn't affect my energy. I just couldn't eat.
Rob Pease (co-host)
Well, Howie, you're going through these things like they're just everyday occurrences, but very few people that I've ever met have been able to ride a century with a condition like that. So I'm just wondering, were the doctors or other medical professionals a little bit surprised that you were able to do this? Or did they try to talk you out of doing quite so much?
Howie
It was to do what I can do. I mean, none of the doctors were telling me to back off.
Valerie Wencis (co-host)
Howie not only rode the century that year, he also rode that Pan-Mass Challenge which traverses most of Massachusetts and benefits the Jimmy Fund for cancer research. That’s nearly two hundred miles in only two days.
Rob Pease (co-host)
How about any friends or family members who naturally just wanted to keep you safe and healthy and just said, ‘Well, you know, Howie, maybe you should skip the Pan Mass this year, I mean you do have a tumor?’
Howie
Well, at that point, it was just, there's a mass.They didn't know it was cancer. They did some more tests and it just kept getting worse. They eventually, in one of the samples, found that it was lymphoma again, but it was large cell lymphoma.
Valerie Wencis (co-host)
Up until this point, Howie had only dealt with small cell lymphoma. The fact that the cancer had changed to large cell lymphoma was not a good sign.
Howie
The day after they actually diagnosed it as being lymphoma, I started R-CHOP, which is Rituxan and full-blown chemo. The size of it started to drop quick enough where I could start eating soft food again. As a result of that treatment, there's been nerve damage.
Rob Pease (co-host)
The treatment – more aggressive this time – left Howie with some challenging side effects. Now he can’t feel the lactic acid build up in his legs telling him it’s time to slow down or stop.
Howie
You're going up a hill, you're pushing, you start feeling the burn of lactic acid as it builds up. I don't feel that. I go past that point and then my legs shut down.
Valerie Wencis (co-host)
Howie doesn’t get the feedback we’re all used to when we really stress our muscles. But he has found a digital workaround. He monitors his heart rate and when it hits a certain number, he eases up. Even though his legs feel fine.
Howie
I need to watch my heart rate and then know where I need to back off. So that it doesn't get too much so that the lactic acid turns off my legs.
Valerie Wencis (co-host)
But the most important thing is that aggressive treatment seems to have worked. Howie’s been in remission for many years now and certainly credits chemotherapy and his oncologists for that. But not full credit – as he believes cycling played a major role.
Howie
They were able to do a more aggressive regimen, versus someone who hadn't been exercising.
Rob Pease (co-host)
And that might seem logical enough. But then again pathology is so complicated. We all know or have read about very young fit people succumbing to cancer, much older less healthy patients surviving cancer. No disease path is simple. We asked Dr. Schmitz for clarification on Howie’s statement.
Dr. Kathryn Schmitz
If you think about in the extreme, a little old lady, 85 years old, who is frail and weighs 90 pounds soaking wet, and doesn't have a whole lot of muscle, doesn't have a whole lot of fat, there's not a whole lot of her to deliver the chemotherapy to. And then you think about somebody who is a regular cyclist and cycles an hour a day, five days a week, and has a fair amount of muscle mass and is in really excellent cardiovascular condition and maybe does some strength training as well. And that person, when you look at those two people and you say, How much chemotherapy am I going to give these two humans, you are able to hit the one who has more muscle with more chemotherapy, which is treating the tumor better.
Valerie Wencis (co-host)
So has Howie’s love of cycling pulled him through recurrent lymphoma? That’s quite possible, but hard to prove. It’s also hard to say what lessons can be drawn here for the general population. Let’s face it. Some of us are not so likely to ride 100 miles or even a few miles with the side effects of chemo.
Rob Pease (co-host)
In fact, Dr. Schmitz describes this as one of the great challenges in her field of exercise oncology.
Dr. Kathryn Schmitz
It is the 60 million dollar question in exercise oncology, because one of the potential criticisms is that exercise is good for those who can do it. Then is it actually the exercise that is good or is it that there are just some people who do better and those happen to be the ones who can exercise as well?
Valerie Wencis (co-host)
Fortunately, though, the field is facing up to that challenge.
Dr. Kathryn Schmitz
So there are a small handful of folks that are trying to answer this, and there are a couple of ways of answering it. One is to do trials that are very specifically in underserved populations to see if we still see the same effects. And the great news is we do, when we do those pragmatic trials, we actually still see many of the same effects, and those are published results.
Rob Pease (co-host)
It is important to emphasize here that Howie was an avid cyclist prior to developing cancer. He didn’t need to develop a new routine.
Valerie Wencis (co-host)
And he seems to be optimistic by nature as well. In our conversations, Howie would much prefer to describe the upcoming rides on his calendar than to look back on the ups and downs of his medical odyssey.
Rob Pease (co-host)
Howie, it seems like you really love cycling. Would you be doing this much cycling if you hadn't had so much benefit from cycling? In other words, if you hadn't had cancer, would you still be doing this much cycling just because you love cycling?
Howie
Yeah, probably. This year I did the New England Classic. I did the Bonton Roulet, which is on the Finger Lakes. I was supposed to be leaving tomorrow for North Carolina, but the hurricane is interrupting that weeklong tour.
Rob Pease (co-host)
So we have found a situation that you won't ride through: a hurricane.
Howie
Yes. Yeah.
Rob Pease (co-host)
Well, how many miles in total would you estimate that you have cycled in your life? Have you ever made that calculation?
Howie
I haven't made that calculation, but, I mean, I'm up near definitely 50,000, probably closer to a hundred thousand.
Rob Pease (co-host)
Well that's a few times around the planet on a bike. That's pretty good.
Valerie Wencis (co-host)
And from those laps around the planet, a few moments really stand out for him. Moments where he’s seeing the world at a slower pace.
Howie
The Kango Manus highway, I mean, it's a long climb and you get up to the top and you can just see forever. You know, the mountains, the trees, it's just gorgeous. Riding up in the Finger Lakes, you're passing waterfalls. It’s a lot easier to see things going 15-20 mph than 40 or 50 mph.
Valerie Wencis (co-host)
Howie has been cancer free for nearly 20 years now, and he plans to keep on riding. There’s no interest in slowing down.
Howie
I kind of view it as I'm living on borrowed time. I don't let it bother me. You know, it probably eventually will get me, but I'm gonna have as much fun as I can until it does.
Rob Pease (co-host)
Many thanks to Howie for sharing his remarkable decades long body odyssey with us. We look forward to checking back with him after another lap or two around the planet.
Valerie Wencis (co-host)
Howie says that his wife has also recently taken an interest in cycling. They’re going to train through the winter, and next spring, get out for some rides together. Hopefully without too many suicide squirrels trying to take them down.
Rob Pease (co-host)
Next time on My Body Odyssey. Another cyclist, but a very different challenge. How do you motivate yourself to manage a disease you don’t yet have?
Valerie Wencis (co-host)
Gene is a high level educator in Boston who’s pre-diabetic. He has a demanding job, a young daughter, and is getting his PhD – yet it’s essential he finds time to exercise or he risks developing diabetes like his father and grandfather.
Gene
Yeah, as a biology teacher I would always talk to my students about epigenetics and how at a lot of times, you know biology is destiny right? But it's also your environment, and so I really do see the relationship between exercise and prolonging my life as a parent.
Rob Pease (co-host)
A lot to learn from Gene and our experts on that next episode. So many Americans and people worldwide are in this category of having elevated blood sugar but not full blown diabetes. We hope you’ll tune into that episode, tell a friend about My Body Odyssey, and tell us about a friend of yours with a challenge that might make a great odyssey episode. You can reach us through social media or leave a voice message on our website at mybodyodyssey.com. This is Robert Pease, thanking all our listeners from the whole team here. My Body Odyssey is a Fluent Knowledge production. Original music by Ryan Adair Rooney.