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Facing Cancer With a Positive Attitude

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Published on May 22, 2020

"In life, you can be a pessimist or an optimist, and whichever one you choose, when you practice, you'll probably get quite good at it. And a lot of people practice being pessimistic, unfortunately," says author David Downs. How do you change that? Especially as a lymphoma patient, bringing humor to your life can be challenging, but worth it.

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Transcript | Facing Cancer With a Positive Attitude

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Recorded May 31, 2019

Esther Schorr:
Hi, I'm Esther Schorr. The world is a very, very small place and getting smaller every day. I'm with Patient Power, and along with my partner in crime, Andrew Schorr, I visited New Zealand not long ago. And before we went, I connected by email with some locals to get advice about what to see and do. And I didn't manage to connect in-person with our guest today, but now I have him.

I want to introduce David Downs. He is a business executive, a stand-up comic and a valiant cancer survivor who's giving back in a big way through telling his story, fundraising for research, sharing his can-do outlook on life and humor. And his humor took his medically challenging road and made it a little less daunting for him and his family. David, how did I do?

David Downs:
Good morning, Esther. Thank you very much. That was great. I'm glad you explained that I'm from New Zealand, because otherwise people would be going, "Where is that guy from? He's got a crazy accent." I'm from the strange little country at the bottom of the world, but we love it here.

Esther Schorr:
And it's a beautiful country. I can swear to that as a recent visitor. It's a gorgeous place to be. David, tell us a little bit about your cancer journey. I know that it was a form of lymphoma and that you went through a couple of different treatments and then ended up with what is a very innovative kind of treatment. Maybe share with our audience just kind of that journey.

David Downs:
Sure. I guess it started for me on—it was actually New Year's Eve in 2016, and I remember it was New Year's Eve, because I made two resolutions that year. I decided I wanted to see more of my friends and family, and I wanted to lose 10 kilos or about 25 pounds in weight. And I guess that's the first lesson is you have to be very careful what you wish for. I should've been more specific. I should have said I wanted to lose some weight without getting a life-threatening illness, because it was only a couple of weeks later when I weighed myself, I'd lost about half of that. I lost about 12, 15 pounds in weight, and I wasn't trying that hard. I wasn't feeling very good. I felt like I had a cold or the flu and ended up going to the doctor eventually.

It took me a quite a while to sort of go, "Oh, maybe I should see a doctor." And then for me, what I thought was it was a mild case of the flu turned out to be cancer, and pretty quickly had to drop out of work and life and everything and concentrate on getting well. Turned out that I had lymphoma, which is a blood cancer, and specifically, it was a diffuse large B-cell non-Hodgkin's lymphoma, if anyone out there knows that. And then difficulty for me was they also realized that I had a particular sub-variant of that which was going to be much more difficult to treat, I think called a double hit lymphoma. So that prognosis, every time I talked to the doctor, it got worse.  

First of all, it was like, "Well, it's cancer, but we probably can treat it." And then it was like, "Oh, cancer, but it's actually a tricky one." And then it was, "Oh, it's cancer, and it's quite a tricky one, and actually, you're going to have to be in hospital and stay in hospital for weeks and weeks." And so basically, I was looking at this thing as a big adventure, really, because I thought, "Well, I've got to do it. I want to learn as much as I can," so that was me. That's how it started out.

Esther Schorr:
Wow. I know there was some story about eating an elephant?

David Downs:
Yeah, because I'm the sort of person that I really love knowing what I'm going to do and having a focus and kind of achieving things. And when the doctor said to me first, "You're going to have to drop out of life and work, and you're going to have to just go to hospital, and it's going to take maybe four to six months at least," and I thought, "Oh my God, how am I going to do this?" And my teenage son Josh said to me, "Dad, you know that great story about how do you eat an elephant? And the answer is you just start eating. You don't think about eating the whole elephant. You just take a bite at a time," and it's definitely like that when you're going through a long-term illness.      

And many people will know this on the call is you can't let the whole thing daunt you. You've got to actually give yourself some progressive steps, and certainly when I was going through it, many days you feel like the seconds and the minutes would crawl past. You'd look at the clock and go, "Oh my God, it's only two minutes since I last looked at the clock. Oh my God, how can I go through this?" But then suddenly, four months would go by, and you'd go, "Oh my God, what happened?" It's this weird time dilation.

Esther Schorr:
Before we get to how you got through all of that, just for our audience's edification, can you just explain a little bit about the stop and start? You went through some treatment and then ended up with something called CAR T, is that right?

David Downs:
Yeah, that's right. I mean, you've just compressed about nine months of my life into one. But, of course, I did the traditional treatments for cancer, which in my case was chemotherapy. And chemotherapy, I ended up with about 12 different rounds of chemo and three or four different types of chemo, because a series of rounds would take maybe three or four months, and that would shrink the tumor. Obviously, it had huge side effects on me as well.     

And then at the end of it, when we stopped and did a test, the tumors would start to grow again, so the chemo was basically working but not effective permanently. And then after three or four rounds of that, I reached the point where my doctors here in New Zealand had to tell me that they had run out of options, and we had a chat. She said, "I think you might want to think about going into a hospice and maybe think about your life."        

And she actually said, "You need to put your affairs in order." And I went, "Well, I haven't had any affairs. Probably too late to squeeze one in now, frankly." But anyway, it was a pretty tricky time. But that was an issue, because there were basically no more options here in New Zealand, but what we had found out was that there was this new type of cancer treatment, CAR T-cell therapy, which is an immune therapy. 

And it's at that time fairly new and experimental, and it still is in a way. And there were options to do it in other parts of the world, and through an amazing series of sort of luck and good fortune, I managed to get on a clinical trial for CAR T-cell therapy. That's why I'm still here able to tell the story.

Esther Schorr:
No, this is great. That trial didn't happen in New Zealand though, right? You had to travel for that?

David Downs:
Correct. Correct. While I was sick, when I first ever got sick, and you mentioned earlier that I sort of used to be a comedian and a writer, and one of the things I could do when I got sick, I had to stop work, but I could actually keep writing. And so I was writing a column for a newspaper, a blog, and every week, just putting this blog out there, because I was finding it a bit entertaining in a weird way, a bit funny and curious to me about the experience of being in hospital and having cancer and all this. And so my columns were kind of comedic.

Esther Schorr:
What did you call it, A Mild Touch of Cancer?

David Downs:
That's right.

Esther Schorr:
Flu.

David Downs:
That's right, because when I first got it, I thought I had a mild touch of flu, so I just thought, "Well, it was a mild touch, but it was a mild touch of cancer." I was writing those, and lots of people were reading them, and it was amazing. And through that, actually, they got shared and shared and shared, because hopefully, they're quite funny. And they're much more about the experience being positive and humanity than they are about cancer, per se, so it's kind of translatable.    

Anyway, I got this email out of the blue one day from a guy who had read this column, and he would turn out to be from New York. And he was just this lovely fellow. He just said, "Look, if there's anything I can ever do, I've loved reading your story over these weeks. And if there's anything I can ever do, let me know." And not only did he say that, he was also the head of immunology for a big pharmaceutical company, so he knew…

Esther Schorr:
"…oh, just by the way..."

David Downs:
I know, and an amazing guy, one of many that had reached out. But so when the doctor had said to me, "Look, we're out of options," we went to Mark, his name is, and said, "Look, we need some help." And he immediately, within hours, put me in touch with some researchers at Harvard Medical in Boston, and those people were on the phone to us the next day. Here we are at the bottom of the world in New Zealand, and me and my wife were on the phone, sharing the phone and, "Yes, yes." And they said, "We think we can get you on this clinical trial, but you'd have to get here to Boston." And New Zealand to Boston, for those who might not realize, it's about 25 hours of flying.

And it's about eight-hour time difference, and it's a big trip. But anyway, a couple of weeks later, and there's a lot to the story that I'm having to leave out, but a couple of weeks later, we were in Boston and going through the tests. And turned out I was a good candidate, and that got me on the clinical trial, so basically, it was this amazing series of events which, if we had more time, I'd tell you the whole story, because it's quite incredible. But so that was a wonderful trip.

Esther Schorr:
That's how it happened. Humor. Not so funny diagnosis, and from what I understand about CAR T, while it can be miraculous as it seems to be for you, knock on wood, it's not such a fun treatment. How did humor and your obviously upbeat outlook impact your journey for you, for your family? What happened?

David Downs:
Well, I'll tell you, first of all, CAR T compared to chemotherapy is a walk in the park. It's, from a patient perspective, much, much better. But I was lucky I didn't have a lot of side effects or anything from CAR T. I guess the question though, for me, humor is one thing, but humor is sort of a subset of positivity and optimism. And I have always been a very positive and optimistic person, sometimes to my detriment, but most of the time, it's a good thing.

And I firmly believe that in life, you can be a pessimist or an optimist, and whichever one you choose, when you practice, you'll probably get quite good at it. And a lot of people practice being pessimistic, unfortunately. You can see people kind of choosing a path that is pessimistic. I always try and think, "What's the best possible day I could have? What's the best possible outcome?" Even when I was in hospital and things were going badly, I was trying to always keep myself in that positive frame, and a component of doing that is—because I used to be a stand-up comedian. Obviously not a very good one, or I'd still be doing it.           

But a component of that is comedians always look at things a little bit differently. They always are looking to find what's different about the scenario, and so when I was writing these blogs or columns, it was always about it's quite funny being in a hospital. These weird things happen. And when you're out of this context of your normal life, you can see these crazy experiences, so for me, that’s positivity.      

And in the early days of being in hospital, when I was first ever having to go to the hospital for days and days and weeks and weeks on end in isolation, we decided that I had to kind of change my mindset about how I was being in hospital. We decided to dress the rooms up, so instead of going into hospital, which is not a very nice thing, we'd pretend we were going on holiday.

Esther Schorr:
Where would you go?

David Downs:
The first week, we went to Fiji, because it's a Pacific Island, and then we went to Paris and Mexico and Vietnam and a whole lot of places. And every time, we'd dress up the room, and we'd bring costumes, and we'd bring props, and it actually got to be a very kind of well-known thing in the hospital. And all the doctors and nurses, they'd come in, and I'd make them dress up, and we'd take photos, and all the visitors.

Esther Schorr:
Did they have food too?

David Downs:
Have food? Yeah, because you don't want to eat the hospital food. That was the first thing, and that positivity, which got me through those first few months where it was like eating the elephant, I realized later that that was building my own resilience, actually, because it actually got harder and harder and harder.           

Of course, chemo gets more difficult as you go through it, so those early steps were actually quite critical—I didn't realize at the time—but for building the long-term resilience. That positivity is always there, and sometimes it looks pretty bleak, and it's difficult to stay positive, but there are always things that you can find that you can hang on to.

Esther Schorr:
Glass half-empty, the glass half-full.

David Downs:
That's right. You can choose your attitude there.

Esther Schorr:
What now? Now you've got CAR T and your therapy hopefully will behind you. What are you doing now?

David Downs:
Well, it's interesting, and lots of people ask this question. When you've been through this kind of life-changing event, so literally being told I was terminal with cancer and to then suddenly almost miraculously going, "Actually, you're fine again. You're better," within a few weeks, it kind of does change your perspective even more on life. For me, what that's meant is—and I was always a very purpose-driven person, someone who wanted to do things that make a difference, but even more so now.        

I'm working to get the same CAR T-cell therapy here in New Zealand, in my country. And again, another little amazing, miraculous story is there's a cancer research institute in New Zealand, a little small one that was always sort of a bit on the fringes, who happen to be working in immune therapy, who happen to have all the technology ready to go, and when this CAR T-cell thing comes along, they find themselves kind of at the epicenter of cancer research.      

New Zealand's only 5 million people, but we are probably one of the first five or six countries in the world to be able to legitimately have a CAR T-cell therapy here, so I'm working to help them. I'm raising money and raising funds, and so I do a lot of public speaking. I do a lot of patient advocacy work now, like helping patients navigate into clinical trials.

Esther Schorr:
You wrote a book, right?

David Downs:
Yeah, yeah. I did. I decided that my columns—by the time I finished, I'd written 100,000 words and 50 or 60 columns, and so I've turned all them into a book, and that book is going to be out in the next couple of weeks, actually.   

And then the proceeds from that book go to cancer research and CAR T-cell therapy and things like that, because, to me, that's the most important impact. But the book itself is a book about positivity and life, and it tells my story that hopefully people are reading there. And it's pretty funny, if I say to myself.

Esther Schorr:
Well, I'm going to read it when it comes out, but just for those who are listening, I'll be sure at the end our producer will add the link to your blog, the link to where you're fundraising, and the link to your book so when it comes out, people can appreciate that.   

Kind of in closing, at least for this chapter, David, if a newly diagnosed cancer patient came to you tomorrow, what would you tell them? What would you say to them if they say, "I don't know how to eat my elephant"?

David Downs:
And I did get that quite a lot, actually. First of all, I've got extreme sympathy for people and empathy, because my story is sort of this amazing happy ending, and I know that not everybody's going to be having that. And so first of all, I don't go in there and go, "Rah, rah, you've got to be positive," because that's not true for everybody. Everyone's got to go about their journey.    

I would say that finding the things that they can anchor themselves to and be positive about is important. It's not always about being positive 100 percent of the time. Sometimes it's about what is it that you can find that will create a sense of achievement or purpose for you? And I think the most powerful thing in humanity is about finding a sense of purpose. It's not always about happiness; it's about purpose.          

And even though sometimes you can be in hospital, you can be feeling terrible, you could say, "What is my purpose? Maybe I could make other people feel better, even if it's not me." And so those things make you then feel better as well. That's the amazing thing about this, so make the nurse laugh, or be nice to the person in the bed opposite or whatever like that, because that sense of that something greater and bigger than yourself, I think, can give you meaning even when you're going through difficult times.

Esther Schorr:
Really, if I'm hearing you right, it's finding what's going to get you up in the morning after having been on a long slog?

David Downs:
That's right.

Esther Schorr:
What is it that's next? And you're a living example of that, David. I have to thank you. I know that we couldn't get into all the details of the fun and frolic of some of the episodes of your story, which I'm sure people will be able to read in your book. I know you also did a wonderful TED Talk, and we'll publish that.

And I just want to thank you from halfway around the world, just sharing your story and your outlook and the fact that things have really gone well for you, for your family, really gives a lot of us a lot of hope. I want to say thank you so much. This is Esther Schorr and David Downs from New Zealand wishing all of you lots of good health and optimism or purpose in life. And remember, knowledge can be the best medicine of all.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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