A Day In the Life Podcast - Jim Bond
In this episode we are talking to Jim Bond who many lovingly called the real James Bond and like the fictional spy who's faced many trials in his life and come out alive and on the other side, Jim bond continues to survive and thrive. Diagnosed with myeloma in 1992, Jim is a retired CPA, a husband who is loving wife Kathleen for more than 50 years, a father of two sons, and a grandparent.
Host: You're listening to A Day in the Life podcast brought to you by the International Myeloma Foundation. We hope this podcast will provide messages of hope and resilience to those in the myeloma community and beyond.
Today, we are talking to Jim Bond who many lovingly called the real James Bond and like the fictional spy who's faced many trials in his life and come out alive and on the other side, Jim bond continues to survive and thrive. Diagnosed with myeloma in 1992, Jim is a retired CPA, a husband who is loving wife Kathleen for more than 50 years, a father of two sons, and a grandparent.
To begin, Jim, I understand you were diagnosed in myeloma in 1992. What was the reason you decided as you said not to do your bucket list and fight myeloma despite a prognosis of three years at the time?
Jim Bond: That's a great question. Let me get into that. Let me start out by thanking Susie Novis because back in 1992, when I was diagnosed and it was at the end it was stage three Myeloma, a lot of involvement bones, protein, urine, all that stuff-- Kathleen who's my superstar caregiver wife was great at finding information. In those days, there was no internet so she did it other ways. She found out about the IMF through an oncologist in her hometown, our hometown of Akron, Ohio.
We now live in the Cleveland area but she found out from this oncologist in Akron, Ohio about Susie and Brian Novis starting this IMF way back around the time I was diagnosed in '92. I just want to upfront say the IMF has been very, very helpful in getting us to where we are and I cannot thank Susie and her team and everybody associated with your organization.
It's just terrific.
Now, in terms of getting diagnosed, I'm a guy who likes to ask a lot of questions. In fact, my living was being an auditor for a large CPA firm. I got paid to ask the questions. When I was diagnosed, we have two major cancer centers in our hometown of Cleveland. When I got diagnosed that I happened to be there for a physical exam, I had to have for work. The young oncologist who diagnosed me I said, "Doctor, if you were me, what would you do?"
He said, "Well, honestly, Jim, you press me for how long you're going to live and I've told you at most three years, everyt1hing goes well." I remember, this was in 1992. This was not today. He said, "If I were you, I would give some serious thought to doing your bucket list. You're a young guy." I was in my early 40s. He said, "Your kids are away at college." He said, "You may not have a chance to do some of these things if you don't do them now."
I thanked him and we went home that weekend and like many listening to this, we're pretty pretty depressed thinking about this awful, incurable, deadly blood disease. We gave real thoughts of doing our bucket list and just throwing in the towel. Here's why we decided not to.
I look back at my own life and realized I had another major setback physically.
I was an inspiring high school baseball star, not star baseball player. I had dreams of being good enough to play at the division one college level and I was pursuing that dream. In a way, that dream was a fence pole where it shattered my leg while I'm catching a foul ball. That ended any chance I had to play beyond the high school level.
It was crushing to me because I had set my sights on that. I realized looking back now in '92, a lot of good things happened because of that injury, that setback medically. A very bad prognosis not nearly like cancer but it was, "Hey, you're not going to you're run again. You're not going to walk properly. You're certainly not going to play the game again."
All that I proved, I overcame. I did walk again. I did run again and I did continue to play amateur summer baseball. I thought, "Okay, that was hard." There was a lot of work involved in that. It was not easy. I didn't think I could do it at the beginning but I did. I thought let’s— I said, "Kathleen, let's make myeloma the same way. Let's put it in a table as a big problem and let's give it our best shot." We decided we're going to go ahead and give this thing our best shot starting in 1992.
That, as you know, it's now 29 years are picked by and and today, I'm in remission and I am active and I do try to do some form of exercise every day. I'm very, very grateful that we didn't do we didn't do our bucket list. The thing I've realized is through these experiences of sharing our story, actually, that's become something that was never even intended to be on the bucket list but it's become very rewarding experience for us.
Host: It seems like it went full circle for you from understanding what it's like to be resilient with the injury through baseball, to living with myeloma, and sharing your story, and sharing that aspect of resilience in your life. Just to share with the listeners, I understand once you did start treatment, you underwent two autologous stem cell transplants in the first seven years of treatment. Then you had an allogeneic transplant at 10 years. How was that process for you?
Jim: Now, remember, again, it's back in time-- back in-- my first auto is in '93, and they were viewed as experimental. My wife Kathleen had to argue with the insurance company about whether to pay for them. She's tough to win an argument from and they did pay for it but it was not the way it is today with an auto in terms of ease of doing them. I did that one and got through it the first one and got almost six years of complete remission.
During that time, of course, we knew it was going to come back. We were told that and we expected that. I'd come out of remission and I have to do something. With nothing else to do in terms of fighting myeloma back in those dark ages, I started my campaign to do a second auto transplant and the transplant doctor here at University Hospitals at Cleveland, which has done all my transplants, he was skeptical.
He said, "Jim, really, I don't think you can do a second one because we use full body radiation on the first one." It's part of the protocol. While it worked great and he said, "It gave you six years," but he said, "That lessens your chances to be able to harvest your own stem cells ever again." I kept that. He didn't want to spend a lot of time on it but I kept reminding him that was on my radar screen.
Then the time came when the cancer came back and I was put on my full court press and he was tired of telling me no. He said, "I'll tell you what, Jim, if you are willing and your wife are willing to go up to the Mayo Clinic from our hometown here in Cleveland up to Rochester, Minnesota and get a second opinion from one of their myeloma experts, feel great."' If he's okay with it, he thinks it will work, then I'm okay with it. So we did.
We made our first second opinion visit. A few more to come but that was our first. He assured me that it would work and he offered to have the Mayo do it but he said, "You've got a good team there at University Hospitals and you're in good hands there." He had it done back in our own town and that's how I got the second auto.
Now, that one, unfortunately, only lasted two years. Again, we didn't have the great drugs we have today for myeloma. In fact, they were just starting to try out thalidomide and they were trying to get the dosage right. It wasn't doing much good for me at all so I was in trouble. My protein level was on the rise. I was getting bone involvement again.
My doctor, my transplant doctor to his credit said, "Let's test your two living sisters and see if either matches you." One of the two, my oldest sister, Becky did match and they harvested her stem cells. The problem was, I was ready to go, they had the cells ready to go. They said, "Jim, lower those expectations. Your myeloma level is way too high to make this a reasonable chance of working. It's a long shot at best to work. Be strong enough to fight the high level of myeloma, but we've got nothing else. Are you okay in trying?"
I said, "Sure, I'm okay." They did. They re-injected Becky's cells and it's we're now at about the 10-year mark of my disease and I got Becky's cells. Kathleen likes to joke that I've been more fun to shop with since I got those female bone marrow cells. She's a funny girl.
Host: [laughs] That's funny.
Jim: I went through the quarantine period staying at home and I thought I was maybe feeling a little better when I got tested periodically. They said, "Jim, your myeloma is out of control. The levels are still very high. While the transplant work, you've got the female cells, but it's not strong enough. We cannot keep giving you blood transfusions every other day to keep you alive. That can't happen." It was looking very bleak.
Host: At that point, I understand the transplant doctor even suggested that you go to hospice. Then how did you face that news? What did you do to advocate for your care at that time?
Jim: Well, I did not take it well. I was told, "We have nothing left for you to do, and you have to go to a hospice." This is a very knowledgeable transplant doctor who knew myeloma. He knew his way around. I said, "Wait a minute, doctor." I said, "We're up to see …. again." I asked him what was on the horizon and he said, "There's a trial of an experimental drug that was showing really good results on a preliminary basis for sick myeloma patients like you."
He advised me he said, "Jim, if you get in trouble, I would try to get in that clinical trial." I brought that up to my hometown doctor who said, "Yes, I know all about that, but you can't get in there. No openings anywhere in the country." Then he went on to say, "You'd be wasting your time to even try." [chuckles] Well, I said, "I don't look at it as wasting my time. I'm sure going to try." He was not happy about that.
He thought I'd listen to him and go to hospice, so he walked out of the room. I went back to my office and made a phone call to Dr. .... up at the Mayo Clinic who gave me some possible leads. I placed those calls to other doctors and I was praying for some doctor to call me back because my disease level's on the rise and I'm not feeling very good. Really praying for someone to call me.
Host: That's remarkable and you ended up getting on as I understand it was an experimental drug regimen, PS-341 trial. How did you fare on that clinical trial?
Jim: I did get the name of the trial was PS-341. It was an experimental drug and the callback I got was on a Friday afternoon. It was from Paul Richardson, British accent doctor up at Dana-Farber. Now, Boston is 600 miles from our home. He said, "Jim, I only have two questions for you. I know a little bit about your case." He said, "How soon can you get up here?" I said, "Tomorrow."
He said, "That's Saturday." I said, "Yes." He said, "Monday would be fine." I said, "Okay, Monday." He said, "Are you willing to live up here for nine months with your wife, relocate?" I said, "Nine months? Sure. Yes." [laughs] I'd just been told to go to hospice. I'm thinking nine months is a gift from heaven. I went home and started packing for nine months. I thought it was suspicious, but Kathleen looked like she was packing for a weekend.
I shrugged and blew that off because I was really not feeling well, all running a fever. My younger sister dropped me off. Denise dropped me off at the airport, dropped us off. She gave me a hug goodbye, it felt like she was hugging me goodbye forever. That was a little emotional but again, I shrugged it off because I'm not thinking clearly and we marched off to Boston, flew off the Boston.
Host: I don't know when this happened, but I understand you ended up becoming known as patient 007. How did that happen?
Jim: I did. It happened quickly. The first night we were in Boston, [00:16:30] we checked into a hotel and I went straight to bed. I couldn't eat, my legs were swollen up, I could barely walk. Fever rose up to 104, 105 and Kathleen was worried I might not make it through the night. She called the emergency number at Dana-Farber for their myeloma emergency people.
The doctor who picked up the phone was doing duty at night, happened to be their leader, Dr. Ken Anderson. He talked Kathleen through what to do to get me through the night and made her more comfortable I'd make it in the next day. Before he hung up, he said, "Mrs. Bond, did anyone tell you that when your husband was entered into our clinical trial, he was the seventh patient who entered that trial, that leg of the trial? Therefore, he was assigned patient 007?" He said, "I think that's good karma."
Well, it was very good karma. [laughs] I went in after a hiccup or two, I started the PS-341 treatments. This is probably the most dramatic part of our story. Within two weeks, which for me was four doses of this PS-341 experimental drug, 99% of my monoclonal protein went into remission. Kathleen could see the difference. I was starting to eat a little bit, feel a lot better. It was a miracle.
Host: It really does sound like a miracle.
Jim: The people at Dana-Farber, they had never seen a reaction like that. The people at the development company who were trying this clinical trial to prove if it was going to work, they had no other source of income. They had no source of income. They were shocked and delighted.
It was a miracle that drug got me into complete remission within a matter of a month or two and we stayed the entire nine-month period.
The drug is now called with the Velcade. Many of us have used it and it's helped many of us. Not everybody and few have had the reaction that I had and they cannot explain exactly why. We had a lot of time while we were out of town finishing the trial up in Boston.
I was thinking and said to Kathleen, "We were fortunate. We were very fortunate that we had the resources and could get up here and relocate. What about people who cannot do that? How can they get out of town for something like a necessary clinical trial?" She said, "Oh, Jim." She's been volunteering for the American Cancer Society for many years before I got cancer. She's starting out the door to door level and she said, "The American Cancer Society owns and operates over 30 of these hope lodges. That's where a patient and the caregiver stay for free while they're out of town being treated at a hospital for cancer. It's usually something they can't get in their own town."
Kathleen wanted to raise the awareness to those because people like me didn't just hadn't known about. She came up with this idea and the idea was to have a bike ride, not a race, but just a ride from one end of our state up here in Cleveland, down to the southern end in Cincinnati, four days, 328 miles.
I said, "Kathleen, that's a great idea but neither of us cycle, neither of us own a bike." She said, "Not to worry," she'd figure all that out. She did with the help of others at the American Cancer Society and her co-leader, who is a cycler, it took him two years to get it planned out, all set, In the meantime, I saw how hard she was working and I thought I've got to do something to support her.
I went out and bought a bike and asked about training and follow the guidance of training and I decided I was going to ride. I was ready to go, ready to do my first …. ride and a reporter asked our younger son before it's time to go. The reporter said, "Bob, do you think your dad will be able to make it four days over 300 miles? He doesn't really cycle, he's got some cancer issues."
I got home that night, listen to Bob on TV with his response. He said, "I don't know if my dad's going to make it the all way or not but I'll say this about my dad." He said, "When my dad says he is going to do something, he'll do it." I'm deeply touched by that. I'll never forget those words.
I also felt pressure that I had to make a reasonably good showing now that my son has said, "Yes, dad will do it." I made it with the help of our oldest son, Jim, who is a cyclist, and Bob's wife, Stacy, guiding me along the bike path in Country Rose, Ohio. I made it all four days, all 328 miles. That was back in '07. I did the same thing for 12 straight years.
Host: That's amazing.
Jim: I'm very proud of that. It's raised over $11 million for the American Cancer Society, whose funding the research played a key part in Velcade ever being discovered by the drug company.
Host: That's really amazing that you keep up with it and you've done that, and you've raised so much money and your whole family's behind you. I think, unfortunately, things did take a difficult turn and you were diagnosed with a secondary cancer, leukemia. What was its likely cause and how have you coped with that diagnosis?
Jim: Let me just quickly fill in on some treatments after Velcade, as we all know is going to come back and the cancer did come back. Here's the important thing in my case. When the cancer came back, it was not raging. It was just monoclonal or just picking up its head. That was a good thing.
I entered another couple of clinical trials because I became a strong and I am a strong believer in clinical trials. I also developed in there somewhere a plasmacytoma. First of my career, that popped up like a cyst in the back of my head, and they had to use radiation to get rid of that. That all went on.
Like I said, I was no danger, it was things they could control. Then you mentioned leukemia that was the blockbuster side effect. In 2012, we were being asked to go out of town and share our story. IMF support groups mostly, which we're happy to do. My nurses said, "Stop in before you go in your next trip, you don't look right."
I did and she drew the blood, came back and said, "You're not right. Your platelets are dangerously low." You're not going anywhere, except you're going to get another bone marrow biopsy. I pleaded with her, I said, "Do you know how many bone marrow biopsies I've had so far?" I was up to around 30. I said, "You sure you need another one because we all know who've been thrown, they're not pleasant things to do." She said, "Oh, yes, Jim, we're very sure."
They drew the marrow, got a call from the doctor. A couple of days later, I'm at home. Kathleen's with me, and the doctor says, "Bad news, Jim, you have leukemia and worse news is treatment-related leukemia, which means to you, the only way you can stay alive is yet another ALLO transplant and this one cannot be from your sister." For the oddball reason that my bone marrow thinks I am my sister.
He said, "This is going to be tough, and we're not sure we can find a match on the bone marrow matching database. You probably want to think about this. You're 64, you've been through a lot. There's no guarantee any of this is going to work or you'll survive it. Get some thought and call me back." I said, "No, no, I don't need to. I'm in. I will be down in the morning."
That happened to be our wedding anniversary night in September. We went out and did the best we could at celebrating a wedding anniversary and next morning got started. That transplant was by far and away harder than the other three combined. 75 consecutive days in the hospital, the transplant floor. Some of those very rough days.
What help that get me through that was, I got a phone call one Sunday night when things are really bleak and it was Paul Richardson from Dana-Farber, Velcade doctor and he said, "Jim, we've got other patients that gotten secondary cancer leukemia like situations like yours, and they've made it through and you can do the same thing, and you will do the same thing."
He had said the same thing in a call to Kathleen earlier. That made me feel wonderful. It really pumped me up. I'm so grateful for the people that run Be The Match and the National Bone Marrow because without them having the names on that list, my doctor would have never found a match.
The interesting thing is when he found the match and I said to him, "That's great news, when do we do the transplant?" He said, "Well, we're not sure we can do it." I said, "What do you mean? You said I'm going to die if you don't." He said, "That's right, you'll die if you don't get a transplant."
He said, "Jim, we can't be the reason that you die. We can't kill you with a transplant and we've got doctors on our approval board who are saying they don't think you can live through this with four transplant given everything about you."
I said, "Do a favor for me, will you? Go explain to those consenting doctors that two months ago, I rode my bike 328 miles, four days, and see if that influences their decision." It did. He came back and said, "We're willing to do it." By Christmas, I was pronounced in remission, sent back home in remission from leukemia. I remained in remission on myeloma the whole time. That's where I remain today.
Host: That's amazing. You have endured so much and truly like James Bond, keep coming back, making your way through it. What are some insights that you have for other patients? I know we've already mentioned exercise, to continue when times get so difficult like this.
Jim: That's a great question. What I mean by exercise is, some may be thinking, "Well, how does Jim say exercise daily when [chuckles] he's already told us he's been through for transplants?" Okay, you're right. When I'm lying in a hospital bed, flat on my back from the medications, it's all I can do to make myself sit up in bed.
Here's the important part, I do that, I push myself to sit up in bed as long as I can, and then I push myself to get those feet on the floor, and hold on to the bed for dear life as long as I can. Then when I'm comfortable with that, I grab the IV pole, and I walk around the transplant floor until the nurses are so tired of bumping into me they bring me a treadmill outside my room.
I think the phrase, sit, stand, walk, that really explains what I mean by daily exercise. Now, there are times in those 12 years when I rode for four days--
Jim: 300 plus Pan Ohio Hope Ride. There are days when I'm exercising a lot, either training or in the ride itself, really, really demanding exercise, but there are other days where the best I can do is something much lighter, but that's okay. I think my goal is just to do-- whatever level I'm at, is just to push myself and do something that keeps me moving around. My sister in law likes to say, "Oh, you mean on your feet, not your seat." I say, "Yes, MaryAnne, that's what I mean. On my feet, not my seat."
Some level of training, but beyond exercise, we do have some other approaches that we think have made a difference. We keep making our plans, our family or personal plans. We don't let the fact that Jim's got cancer get in the way. If something comes up because of cancer, so be it, but we learned that one day I was coming home from work, early on after my first transplant. I was in remission. I was doing great but Kathleen's nerves were shot because there was nothing for me to do, no maintenance was being done in those days and she didn't know what to do with herself until a pink Buick ran a red light and bashed into the side of my car.
Damaged the car, but not me, and when I called Kathleen to tell her that I had to go down to the police station report this accident, she was ballistic angry at me and I thought, "Wow, let her go," but she finally called herself and realized, "Hey, it's not Jim's fault." Somebody ran a red light but really, it sunk home for Kathleen that, "Look, any of us can get taken out at any moment. It doesn't have to be cancer. It could be anything." That helped her to regain her footing and made it easier for her to agreethat, "Yes, we can plan on doing this, that or the other thing because we don't let this one risk get into our way, there's lots of other ones out there."
Another approach that we find very helpful is something that we call the 8:00 PM rule. What we mean by the 8:00 PM rule is at eight o'clock at night, all cancer talk stops. Whether it's [00:03:00] it's in a phone call or between us, mostly between us. We stop because our reasoning is we need some time to unwind and relax and just, whatever before it's time to go to sleep. Now to be truthful with you, it used to be a nine o'clock rule, but we're that much older now, it's eight o'clock and if it ever gets to be seven o'clock rule, we're going to keep quiet about it.
Another approach that we find very useful is trying our darndest to strike up a partnership with the doctors and the nurses treating me. We've been largely successful with that, there are a couple of exceptions, but by partnering I don't mean trying to boss them around, that's not going to happen. I wouldn't want it if-- they would love me because they know so much more about medicine than I'll ever know or want to know. I know an awful lot about our case and Kathleen has done a ton of research and she knows a lot and she knows-- she's got a lot of notes along with mine on my case, so we think a partnership makes a lot of sense.
All I want is to have a say in decisions. It's worked out well, sometimes causes some work on my part to get two doctors to work with one another when one's out of town and one's in town, but it's all been doable for us. We think sharing our story has been very helpful for us and I've got to take my hat off again to the IMF for being the enabler for that. There's no organization even close to having the reach and the compassion to invite some people like Kathleen and myself to share our story. That's been very helpful for us. We stay informed and again, the IMF is on the leading edge of helping us do that and Kathleen does the research and all that.
I try to stay focused on the--work as the patient side. There have been adverse effects and I wish there was something I could do to help the approach there but there isn't much-- if I said I did, maybe I did and I did develop graft versus host disease from the leukemia transplant, and that was from a German woman, a woman living in Germany, and it affected my eyesight very much. I couldn't drive my car. My eyes were closing down about noon and we couldn't find an answer anywhere here in town, but with research, the help of others, we found a place out of town and I'm wearing these devices that return my huge contacts that I fill with liquid every morning take out every night that returned my sight to normal.
If you look at me, you'd say, "Well, yes he was never an athlete," because I'm three inches shorter, my back is twisted, my one shoulder is not working because the bones are destroyed from when the Myeloma was active. I had a hip replaced because of Avascular Necrosis which--you might find this interesting, I was told by the surgeon doing the hip replacement that his experiences with cancer patients who have to take long steroids over a long period of time are at higher risk for Avascular Necrosis. He said, "That doesn't mean your other hip is going to go," and so far it has not, but he said that's just something that you got to put up with as a person who has to take steroids.
Well, that influenced me and whenever I have a chance of a drug combination-- when the Myeloma was active, I would ask if it's possible at all to try it without the steroids and see how it goes. That had some positive effects. Some people-- a lot, my thyroid blew out, got shingles after the first two transplants, I'm at high risk for skin cancer. My dermatologist group at the same hospital says, " Well, Jim that's because your immune system is different after a transplant," and so I go in and get my skin checked every four months whether I have a spot or not and they always find something.
They've been able to control that though, but I didn't know that and that's something for us that have gone through a transplant might want to keep in mind. Some hear our story and they say, "Jim you're just lucky." [laughs] and I say "Yes, I'm very lucky. Lucky in so many ways," but I will also say this about luck, and I took it from a golf instructor, no longer with us, who told us, collegiate golfers, "When you're facing a long, long putt, across a very undulating green, of course, the golfer's lucky if it goes in one stroke, but the key is you got to hit that ball hard enough to get it at least to the hole and thereby give luck a chance to happen."
We believe that's what we've done. We've done everything in our control to give luck a chance to happen and I further believe that by listening to a podcast like this and staying informed by looking at the IMF material, I think you are also giving yourself a better chance for luck to happen. I really would add this, that you can contact me at [email protected]. Thanks to the help of the IMF, I get emails from all over the world, and that includes the Middle East, there's New Zealand, England, Canada, Latin America and we have been to 40 of the 50 U.S States, either virtually or in person.
The IMF has played a huge role and it's for that reason that I dedicated any profits on the book that I wrote this spring to the IMF and other charities because I'm absolutely grateful for all the IMF has done for us. If you have any interest in that book, I can get you information on it.
Host: We are very interest--
Jim: It's the only book I've written, … written notes, but it would be pretty easy to find on Amazon.
I really appreciate the opportunity to tell our story. I hope I made it clear that none of this would have happened without Kathleen because I'm so blessed to have her as a caregiver because she has done so many leading-edge things that the doctors agreed with, and got implemented and helped my case. Thank you so much to the IMF for giving me this opportunity.
Host: Well, thank you so much, Jim, for sharing your story. It is truly a story of endurance and resilience, and I'm sure it's going to be an inspiration to so many other patients who may be facing the same news that you had, where you were told to go to hospice or so many different situations where they thought they were out of options and you continue to advocate for yourself. I think that message is going to be very important to our listeners. Again, if you want to reach Jim, he's available at [email protected]. J-I-M, B-O-N-D. Thank you so much.