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The Man in the Arena: Multiple Myeloma Survivorship Story

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Published on September 21, 2021

Couple Shares Their 29-Year Survivorship Story

Twenty-nine years ago in 1992, James “Jim” Bond was given three years to live and a diagnosis of multiple myeloma. Jim and his wife Kathleen share their survivorship story in this short interview. The couple recently published a book about their experience navigating life with multiple myeloma: The Man in the Arena. Keep watching to learn more.

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Transcript | The Man in the Arena: Multiple Myeloma Survivorship Story

Andrew Schorr:
Hello. I'm Andrew Schorr with Patient Power in California. And joining me is my wife of 35 years, Esther Schorr.

Esther Schorr:
Hi there.

Andrew Schorr:
That's Esther. And of course, I've been living with leukemia about 25 years, and then another condition about 10, myelofibrosis. But joining us now from near Cleveland – Shaker Heights, Ohio – are Kathleen and Jim Bond. Jim has been living with myeloma for 29 years, and he's written a book called The Man in the Arena. So, Kathleen and Jim, welcome to Patient Power.

Kathleen Bond:
Thank you.

Andrew Schorr:
Thank you, Andrew.

Kathleen Bond:
It's good to be with you.

Andrew Schorr:
Good to be with you.

Esther Schorr:
Good to see the two of you.

Andrew Schorr:
So Jim, you've been through it. And I would have to say, as I know from Esther's experience, Kathleen, you've been through it. Quite a windy road. So, Jim, first of all tell us, why did you write the book?

Jim Bond:
Andrew, that's a great question. We were staying in the house a lot because of COVID-19. So, I had time on my hands. I was driving Kathleen crazy. And so, I thought, why not write a book? Because I think it may give other people some hope. If they're like me and they get diagnosed and told the odds are you're only going to live three years, Jim, and maybe you should do your bucket list. And the doctor was accurate in saying that, and I was in my early 40’s. And here I am 29 years later. And I thought, I think that can give somebody hope. I thought, well, I can, and I'm a note taker, so I had lots of documentation. So, I thought, I'm going to go ahead and write it, at least for my family's sake. Surprisingly people who don't have cancer say, “Jim, this can help people with problems they're facing because it gives people hope because you guys didn't give up. You guys kept going.” And we had some low points.

I mean, I was told to go to a hospice after 10 years of battling myeloma, which was, 10 years was a good run. And back in those days, for sure. And it got me onto... That comment got me motivated to get into a clinical trial and an experimental drug saved my life. It became Velcade (bortezomib), which has helped many thousands of people around the world with their myeloma, multiple myeloma. So, it's been quite a roller coaster ride. Lots of ups and lots of downs. And for sure, as you implied earlier, it's been probably harder on Kathleen than it has been on me.

Kathleen Bond:
We argue about that.

Esther Schorr:
Oh, we will.

Andrew Schorr:
Well Esther has questions for you, Kathleen. About to ask her. Go ahead.

Esther Schorr:
Well, I have one for Jim before I get to Kathleen. Jim, so obviously it would be great. It sounds like reading your book would be helpful to anybody who's looking for hope and some guidance along what can be a very rough journey. But can you kind of give us an idea of the key things that people will take away from the book, as far as what you and Kathleen went through, and what they might take away from it?

Jim Bond:
Yes, yes. We've read some other cancer stories, and this is a little different. This book focuses on our approach to dealing with cancer, both as a patient and as a caregiver. And it also focuses on tips that we've learned that help us to live with cancer and do it in a way that we're comfortable with. And I can give you some examples of that from a patient's standpoint.

Esther Schorr:
Sure.

Andrew Schorr:
Go ahead.

Jim Bond:
I mentioned one, getting onto clinical trials. I've become a strong believer in clinical trials when they're appropriate. I've done six in total, and also, I believe in second opinions. And we've done several of those in several different places, including the Mayo Clinic, and Mass General in Boston, Dana-Farber in Boston, as well as my hometown here. And this is crucial, I believe in daily exercise in some form. Now in reading my book, you'll say, okay, this guy's had four bone marrow transplants, stem cell transplants, which I have. And how can you do exercise when you're knocked down with drugs in the hospital bed? Well, what I mean by daily exercise is getting myself to sit up in bed on those days when lying down is all I could do and pushing myself to get out of bed and stand next to it. And then grabbing that IV pole a couple of days later and walking around the transplant floor.

Esther Schorr:
So movement, not necessarily a big exercise routine. Just moving.

Jim Bond:
Well, some days Esther, it is just making myself do as much walking, or standing, or what I can. But then, you also read in the book that we figured out kind of early on in the clinical trial, we had to relocate 600 miles to Boston for nine months. That was the deal, which was better than going to a hospice, so...

Kathleen Bond:
Yeah, that was the choice.

Jim Bond:
But we learned in doing that... We knew, but we got to focus on how lucky we were that we had the resources that we could do that. So, I said to Kathleen, well you spent your lifetime, really your adult lifetime, volunteering for the American Cancer Society. What can people do that don't have the resources? And she said, Jim, that's why the American Cancer Society operates over 30 Hope Lodges around the country. And patients and their caregivers stay for free.

Jim Bond:
Often like us, because they had to leave town for something they couldn't get in town. And I said, great, but why don't people know about that? And she said, well, we don't advertise. So, one thing led to another, and she came up with this event. And I watched her for two years.

Esther Schorr:
What event was that?

Kathleen Bond:
You didn't say.

Jim Bond:
It's a bike event called the Pan Ohio Hope Ride. And it's where people ride their bikes four days, 328 miles across the state of Ohio to raise money and awareness for Hope Lodges. We didn't cycle. That didn't stop her. So, I thought, well, if it didn't stop her, then why should it stop me. I went out and bought a bike. She didn't ride, but she was our leader. And I bought a bike, and I found out how to train. I trained. So, on those days, Esther, those training days... No, it was a lot more than just keeping active.

Andrew Schorr:
Yeah. Well, it's a great story. Okay. Let's look at the other side of it, because there is this beautiful woman next to you, Kathleen. You've been married how many years, Kathleen?

Kathleen Bond:
Going on 51 years.

Esther Schorr:
Woo-hoo!

Andrew Schorr:
And you have how many...

Kathleen Bond:
In September.

Andrew Schorr:
How many children and grandchildren?

Kathleen Bond:
We have two children. Two sons, and three grandchildren, and counting.

Esther Schorr:
Way to go.

Andrew Schorr:
So, let's find out for you. Okay. This journey, it's been his journey, but it's been yours. It's been communicating with your kids, grandkids. Jim was an accountant. I'm sure they were coworkers. People were saying, Kathleen, what's the story, what's the story? And you basically having hope in your heart and keeping your head on straight. So, what do you want to say from the care partners point of view to our audience with a man that's been through this for almost three decades?

Kathleen Bond: 
Well, it certainly was not easy. And I don't ever want anyone to think we're trying to make this sound easy because it's not. And when Jim was diagnosed, it was a disease I'd never heard of. We had other family members, particularly in his family, that were diagnosed cancer. They were very different cancers, and no one lived very long. They were gone in a hurry. And his family was reeling from the death of his sister just months before Jim was diagnosed. And she was only 40 years old and had just had her first child. And she was gone from melanoma, the skin cancer. So, his family was reeling. Everyone around us knew we had just been through that. And then Jim gets this diagnosis. And I can tell you, I think everyone that hears the words “You have cancer,” what a gut punch that is.

And you're struggling to even get air because you just can't believe what you're hearing, especially hearing it when someone has been so healthy, like Jim was. And Jim seemingly did everything right. And here this hit. And I decided what I was going to do was not let this cancer take me too. And I got mad and thought, you know what? I'm going to do everything I can to make sure that Jim's the best patient he can be and get his body strong enough to undergo whatever he needs to undergo. But I'm not letting it take me down either. So, I maintained my exercise. I made sure I was eating right. And yes, sleep is a challenge. I did everything I could to help sleep at night. And that didn't mean taking anything. It just meant a lot of self-care on my part. And yes, there were nights that was tough. And it was terrifying through this whole thing.

But I threw myself into finding out everything I could about the disease, which I found empowering. And this is in 1992, so it wasn't easy. There was no internet then. And what I did was end up in medical school library, looking up journals and getting the articles printed out on the paper that had the track feed, if you remember that. I don't know, they had something called Medline. And so, I'm sitting there with a librarian helping me figure out all these articles. And I started noticing the names of who's writing these articles, who are the doctors that are being mentioned. And we determined that those are the top authorities in this disease. And we asked Jim's doctor about a couple of names too. So, we fax those people letters, very short paragraph about here's Jim's situation. What would you do if you were in our situation?

We faxed the top five. We determined where the top five authorities in the disease. They all got back to us. Two of them the same day they received the fax. I could not believe it. And we were... We weren't anybody. I mean, we were not using any kind of insider stuff. It was just, we were two desperate people in Cleveland. And these doctors were compassionate enough to get back to us. And they said, you know what? You're lucky you live where you live. Here's what we would do. And you can get it down there, which we found hugely reassuring. And we knew we were in the right place with the right doctor, and we felt comfortable moving ahead and carrying out the plan. And I will say the first chemo regimen Jim was on back then didn't work. The doctor switched to the next one. That started to work. But I mean, there were a lot of ups and downs along the way.

Jim Bond:
Kathleen came up with a great phrase that really helps us live with cancer. We came up with it after a couple of years. She calls it the 8pm rule.

Kathleen Bond:
Oh, yeah.

Andrew Schorr:
What's that?

Kathleen Bond:
Early on in all this, we... I realized we could not turn off thinking about this. And I'd be sitting there reading about it, and then we'd be talking about it. Next thing we know it's 9:30 at night, and who can sleep? So, we decided we were going to have a rule that at eight o'clock at night, no matter what's happening, Jim could be in the hospital, Jim could be home, no matter what, we are done with cancer. We don't talk about it. We don't deal with it. Everyone knows if they want to know something, they have to call us before 8pm.

Esther Schorr:
Kathleen, I have one other question for you. So, you mentioned family, and that your family was not... It wasn't an uncommon thing, unfortunately, in your family to be dealing with some form of cancer. How did you deal with communicating what was going on for the two of you, and especially for Jim, during this time? What was your approach to that?

Kathleen Bond:
Well, we had what we called our point people. And we had on each side of the family, a point person that we would inform on what's happening, what the game plan is. And anybody else that needed to know called that point person. Now this again, was before there was email, and text messaging, and all that. So, we weren't doing that, but we did have our point people. And that was true with our friends. We would have a point person in the circle of friends. So whatever circle we had, the circle at Jim's office, the circle of friends and the family, we had point people. So that cut it down quite a bit. And we also had both of our sons were in college, one was a senior and one was a freshman. We had just gotten our empty nest when this happened. And we told them that we would tell them every single thing that was happening and good, bad, or ugly, they were going to hear about it.

But if they weren't hearing anything, it meant status quo. So, they didn't have to worry that we were withholding anything. And that proved to be very reassuring for them because they knew they were up to date. And I'm sure they were worried sick. And if they had to call or come home, they did. If they wanted to, just to make sure we were okay, they would come home. But doing that, letting them know right up front we're going to tell you everything, we're not going to hold anything back, gave them a lot of reassurance.

Andrew Schorr:
That's what we do too, I would say. We have three kids. So, Jim, this almost 30-year journey with myeloma. First of all, you've been in all these trials, really been a pioneer in a number of medicines that have made a difference for tens of thousands of people. We may have newly diagnosed people watching this. And I hope they'll read your book, The Man in the Arena. Things have changed a lot in myeloma. It doesn't mean people don't die. They do. Doesn't mean people don't have more aggressive illness or changes along the way. But it's certainly a more positive story. What would you say to them now?

Jim Bond:
I would say that it's a shame that you have an incurable blood cancer, but you're in really a much better position today in 2012 than we were in 1992. You've got all these specific, effective, multiple myeloma drugs. And we had none of those. And because of two of the six trials we were in, today we have Velcade, and we have Revlimid (lenalidomide), they're used worldwide commonly. So, you've got a lot of options as a newly diagnosed patient. And there's every reason for you to have a lot of confidence that you can make this thing into a long-term survival. Unfortunately, there're no guarantees. And every case really does turn out to be unique. But there's so much there, and I know I wouldn't do the same pathway that I did the first time. All I had was transplants that keep me alive for 10 years, the first, back then. But today I would use other tools and wait until I needed the more powerful ones. Yeah.

Kathleen Bond:
I like to say there's a lot of tools in the toolbox now.

Jim Bond:
There are. There are.

Esther Schorr:
So Kathleen, what would you tell a new care partner? Somebody whose spouse or a loved one has just been diagnosed with something serious. I mean, and they're at square one, just like you were many years ago. What would you tell them to do?

Kathleen Bond:
Well, I would suggest that they learn what they can about the disease and arm themselves so that they can help in the decision-making. And I would also tell them that there are a lot of tools in the toolbox. So, there's hope, there's a lot to be encouraged about, but it's a long slog. It's a tough, tough thing. And I know when they've used some of these tools, they often employ steroids. And when we do our public talks and I'm in the room with people, which hasn't been the case this last year, I can tell who the caregivers are because when someone mentioned steroids, everyone's eyes are rolling. I know immediately who the caregivers are because they're living with someone on steroids. It's not easy to be on steroids, but if you're the one living with them, it's hard. And I always say, that's why God made doors. Go in the other room, shut the door, let it play out.

But I do tell them there is a lot of hope, and I also encourage them to get in a support group, to learn more about the disease, but also learn the coping mechanisms other people have employed. And we have a lot of strategies in this book that helped us. But there are people out there, just sharing the burden of this, makes it lighter. And I don't think I would have believed that or understood that when Jim was diagnosed. There weren't any support groups. And I don't think I would have had the courage to even go to one because I think I would have been afraid of what I'd hear. So, I didn't want to be borrowing someone else's trouble. But having participated in a lot of support groups as a speaker, and hearing what goes on and what people share, I see the benefit in it. The programs that you and your husband do. The benefit in that is immense because it truly helps people to feel they're not alone, and it helps lighten the load. And it is a load.

Andrew Schorr:
Wow. Well, I'm touched, but I'm touched just connecting with you two. And your dedication, the fundraising that comes out of the book, the fundraising that comes out of the bike ride, making a difference and really paying it forward.

Esther Schorr:
And the insights about steroids.

Andrew Schorr:
Yeah, and the insight about steroids.

Esther Schorr:
Been there, done that.

Andrew Schorr:
I was on steroids for a while. And I was cleaning the house, and hopefully I wasn't too moody, but I....

Esther Schorr:
No, I just put my feet up. Go for it dude.

Andrew Schorr:
I was doing everything.

Esther Schorr:
Great when it works that way.

Andrew Schorr:
I want to remind our audience again the book is The Man in the Arena.

Jim Bond:
I've got a copy right here.

Andrew Schorr:
Jim and Kathleen. There it is.

Kathleen Bond:
Shameless plug.

Andrew Schorr:
I wish you all the best. I'm glad it's off to a great start, hoping we can help. And I think for Esther and I, as a couple, also not dealing with myeloma, but with other cancers and talking to people many with myeloma, but with other cancers as well. I think there's great information that applies to a wide audience. Kathleen and Jim, thank you for being us today.

Esther Schorr:
Thank you both.

Andrew Schorr:
We wish you long life, and good health, and good exercise. Okay, Jim?

Jim Bond:
Andrew.

Kathleen Bond:
Thank you.

Jim Bond:
Thank you. May I just leave the audience with my email?

Esther Schorr:
Sure.

Andrew Schorr:
Sure.

Jim Bond:
If anybody would like to contact me. It's jim.bond48@gmail.com.

Andrew Schorr:
Okay.

Esther Schorr:
Perfect.

Andrew Schorr:
All right, folks. Very personal. We're all in this together. Thank you all for being with us, Kathleen and Jim. Thank you for being my care partner through this and we'll keep at it. We like to say that knowledge can be the best medicine of all. See you.

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