[ Anglais] “Like Riding a Roller Coaster”: An AML Patient’s View on the Emotional Impact of 27 Years With Cancer

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Topics include: Treatment , Treatment Journey | Survivorship and

Meet patient advocate and 27-year survivor Jim Bond as he shares how he coped with the emotional ups and downs of his treatment journey after being diagnosed with multiple myeloma then years later with acute myeloid leukemia (AML). Jim walks through the difficult lows of living with two blood cancers, tremendous highs he experienced after achieving remission and discusses how he deals with emotional turmoil.

This is a Patient Empowerment Network program produced by Patient Power in partnershipwith The Leukemia & Lymphoma Society. We thank Astellas, Celgene, Jazz Pharmaceuticals, and Novartis for their support.

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Transcript

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.

Beth Probert:                                    

So, Jim. You are a long-time survivor. How has your cancer diagnosis impacted you emotionally?

Jim Bond:
Well, it's been like riding a roller coaster. My caregiver wife, Kathleen, Kathleen is sorry she can't be joining us today. But the lowest point, of course, was getting diagnosed with a deadly incurable blood cancer. My first one, multiple myeloma. And then the second one, AML, many years later.

And so, what we tried our best to do is, to try to even out that roller coaster ride emotionally. And, I'll give you an example, after 10 years of dealing with myeloma, I was told, Jim, there's nothing left that can help you, you need to go to a hospice. And that was obviously crushing.

And what we tried to do is pull each other up and say, "Look, we've been through tough spots before." And we figured out that just rely on the doctors, rely on our own research ability, and they’ll be something coming up. And we were able to figure out, hey, there's a clinical trial that was mentioned to us, and within a month of being told to go to a hospice, we were out of town in a clinical trial, and within two weeks, I was told, "You're in remission."

So, that was a tremendous high. And again, what we try to do when we get really good news is pull each other down and try not to be so excited, but we try to even things out. And that's very difficult to execute, but for 27 years now, we've had a good deal of experience. There are a few other things we do emotionally, we say, "Look, let's do all we can, and then let's not look back and second guess ourselves."

And even to make it more normal, we cut off all cancer discussions with ourselves, ideas, or with a family member at 8:00 p.m. our time. We say, "You know what? Let's just do what we're gonna do at night, and let's defer that to the morning." That tends to let our emotions calm down and let us live more normal lives. At least in our minds.

It has not been easy. It's been very difficult and emotionally at times, we've actually played a role of trying to lift up the medical team who, the AML diagnosis in particular, they explained to me, "Jim, you're 64 years old," When I got AML, that was seven years ago. They said, "Your chances of survival are not good. The only way you can live is through a fourth bone marrow transplant. And this one has to be not from your matching sister, but from an unrelated donor, if we can find one."

So, they really encouraged me to consider just hanging up, but our approach, and this helps us emotionally is, no, we’re gonna treat this thing called cancer like a problem. We're gonna put it in front of us, and we’re gonna deal with it as analytically, or unemotionally as we possibly can. And lo and behold, the doctors, as they'd come around in my, I don't know, 10-week stay in the hospital, whatever it was, they would keep trying to say, "Jim, don’t get your hopes up. This might not work out."

And it did work out, and we found ourselves much better off by, I do my favorite thing, and that is, I make myself exercise each and every day. And sometimes that exercise is not much, it's walking with my IV pole around the floor section when doing a transplant.

Or it's walking on my treadmill on snowy icy Ohio days like today. But that helps me emotionally, because it gives me something that's not cancer, it's quiet time to think, and it really led to something that’s been just magical in terms of helping both of us emotionally.

When I had to leave town to do the clinical trial, my wife, Kathleen, got to thinking as a long-term volunteer of the American Cancer Society, she realized that there are not enough people in the country aware of these things that the ACS has called, "Hope Lodges." So, she founded, launched, and leads, to this day—this was 13 years ago, she launched the first one. And I was not a cyclist, but I saw a link between the exercise that I think is so vital for me emotionally and physically, and this bike ride. So, I decided to buy a bike and trained. And I'll be darned, I've ridden it every year four days, 328 miles from Cleveland to Cincinnati.

Beth Probert:
Wow, well that is really inspiring.

Jim Bond:
Thank you. And that helps me tremendously emotionally because that training and riding takes up a good three-and-a-half, four months of my year, and I look forward to that, and the fundraising is tremendously exhilarating because I get to hear from people that I don’t hear from that often.

Beth Probert:
Did you reach out to your doctor in regards to this whole emotional turmoil, and you said earlier the, "Roller coaster." Was that a talking point with your doctor, by the way, on how you're feeling and how to cope? What direction did you take when you were first diagnosed, and was your doctor part of the conversation?

Jim Bond:
Well, we've been very blessed, very lucky. My first doctor who diagnosed me, he really helped me by answering this question that I asked.

And asking questions is a good way for me to relive stress and gain information, like the kind of information that Beth and Tom talked about.

When I was new to blood cancer, I said, "Doctor, now, if you were in my shoes, whom would you have treat your case?" And frankly he was shocked because he was at a leading cancer institute in my hometown here, in Cleveland Ohio, and he gave it real thought. And his compassionate answer blew me away. He said, "Jim, the professor who taught my blood cancer course at the medical school works in another hospital. Another leading cancer institute here in Cleveland. And if I were in your shoes, I would go to him."

Now, what I did—and for 10 years, until he retired, that man helped us, my wife and I, emotionally and medically in more ways than I could ever describe.

An 8:00 phone call one night, and which we had never gotten from him, his name was Bob and of course, it's a doctor, it's an oncologist, I've got a deadly cancer, he's calling at night. I'm thinking, "Oh, my god. The world's coming down." He really relieved our stress, he said, "Jim, those shoes you had on at your last appointment, may I ask you where you got those?"

So, like you said, Tom, each case is unique, and in our case, stress has been relived in some very unusual ways. I got in a car accident after my first of four stem-cell transplants, and my wife was having real problems with stress, because now I was in remission and seemingly home free until it came back five years later, but she was really stressed out until I had a car accident where, not my fault, but somebody t-boned me and it really was a tough accident.

I was okay, but the car was wrecked. But when I called her to tell her that, she flipped out. And all this pent-up emotional stress she was going through came out, and it manifested in her yelling at me, how could I possibly have an accident after all we've been through? And the thing is, she caught herself, she listened to herself, and she realized, oh my gosh, what's the point in getting yourself all in a knot over your incurable deadly cancer? You can get taken out by a car accident as any time. Things like that.

Beth Probert:
Absolutely. So, she really put it in perspective for you, didn’t she?

Jim Bond:
It really did. It really did. It just happened, it was coincidental that it happened, but it did. And so, we've used that.

Another thing that really helps us with stress is, and this is gonna blow some people away, but the longer we've survived with these two cancers, the more we've gotten asked to share our story around the country. And if fact, in two countries overseas.

And here's the thing. We realized from the very first story telling we did in our home town, how much telling our story helped us emotionally. We looked at each other when the couple left our house and we realized, oh my gosh, just sharing our story and the roller coaster parts of it, not the technical parts, but just the emotional part, that really helped us. And so, we welcome other opportunities, and we encourage other survivors, whether it be short-term or long-term survivors, to consider the kind of things that the LLS has, and other organizations that get us out there, get people out there to share your story. It is very helpful for us. And that was a huge surprise to us.

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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Page last updated on March 5, 2019